Brianne's LEAP of Hope
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Briannes Story

April 1999

Brianne’s birthday is May 5, 1998.

My name is Patti Zabot, my husband Rick and I have two beautiful girls, four and six. Our second girl Brianne who turned four May 5th, has had a rough little life. On April 8th, 1999, when she was 11 months old, we took her to emergency at Alberta Children's Hospital as a doctor at a local clinic told us she was having a partial focal seizure.

I first had her checked by the clinic as her left leg and arm were "jerking" in sync. She appeared perfectly normal otherwise, no glazing eyes or staring at all and no other symptoms resembling seizure activity. It was a very scary experience for us, as it all seemed to happen “out of the blue”.

The jerking stopped after 24 hours but we spent five days in hospital (three days in ICU due to the fact she had been giving an extremely high quantity of drugs), all anti epileptic drugs, to stop the so-called "seizure". She was put on a medication called Tegretol for her “partial seizure disorder” and sent home. All was well, she continued to develop normally although her walking she never did independently until 16 months, but she did it and we were thrilled. We just assumed she was a “late walker”. Prior to this initial onset, Brianne developed normally, reaching all milestones on time and some even early. No reason to think anything was wrong with our sweet little girl who brought joy and love to anyone who met her.

Brianne seemed to have recovered from this ordeal and we were sure it was over. Sadly, in January of 2000, the jerking reappeared in her head and neck. It was worsening as each day came and went. Nine months later from the initial onset of symptoms, on Feb. 14, 2000 at 4:30am, my husband discovered Brianne aspirating while having a tonic clonic seizure (more well known as a grand mal). EMS came and stopped the seizure (which could have lasted anywhere from one minute to four hours in duration) with valium and rushed us to hospital.

They saved her life. We were admitted for five weeks trying to stop the jerking/seizures and to find some form of treatment. Her myoclonus (involuntary jerking) had taken on a new turn, now was not only left sided, but now had moved to both sides. All four limbs were jerking out of control as well as her head and neck, it was a horrifying sight.

We felt so helpless. The fear was overwhelming. We were told nothing as far as a diagnosis, the doctors all baffled could not pinpoint what had gone wrong in Brianne’s little body. Several MRI's, a CT scan, EEG's, spinal taps and many other blood and urinalysis all with no abnormalities. She had lost her ability to crawl and walk obviously due to this February relapse.

Brianne has had many relapses of symptoms since then, mainly the myoclonus causing her body to jerk uncontrollably, leaving her weak and lithless. She also is very hypotonic, which means she becomes very floppy when symptoms worsen, as her muscle tone becomes extremely low.

I should mention some of the added attempts to try to help Brianne’s myoclonus. Some of the medications we have tried in attempts to stop the myoclonic jerks include at least 14 different anticonvulsants. (Clonazepam, dilantin, Phenobarbital, valproic acid, valium, ativan, lorazepam, gabapentin, clobazam, ethosuximide, topamax, rivatrol, nitrazadon). These are those that I remember off the top of my head, there are more. We also did 2 different treatments of IVIG gamma globulin therapy, which never helped.

Another failed attempt (and the one which took us two months to make the decision due to the heavy risks and side effects), was a three month, extremely heavy and intense treatment of ACTH steroids by injection. This was from May to August of 2000. This also was unsuccessful at stopping the myoclonus as we had hoped and now she has an irregular heart beat due to the ACTH.

I feel we have filled her little body with enough drugs for five lifetimes. I cannot do it anymore, I feel so bad for what she has been through already. I often wondered if the vaccines Brianne had as an infant caused her problems. She had them on three different occasions, at two, four and six months of age. She had the DTP, Haemophilus influenza Type B, and Polio on all three visits.

I was never told that there were risks involved in these vaccinations. This I had to find out through researching, what I found was alarming. When I went to the health unit to get her 12-month vaccine, the nurse thank goodness, never felt comfortable giving Brianne the vaccine considering what she had just been through with the first bout of this illness. This raised a flag for me, which in turn led me to find out more about the side effects of vaccines.

I do realize it is an extremely controversial issue and incredibly hard to prove damage was in fact from the vaccines. There are many opinions on both sides, but when you have a healthy child, they have a vaccine, then become unhealthy, it makes you wonder, that is all I know for sure. I also wondered if she is a chemically sensitive child, which we are hearing more about all the time, due to the environment and the foods we are eating. I have tried so hard to figure out what is wrong with my baby girl. I will keep searching until someone can tell me without doubt what has gone wrong in her body.

My pregnancy was normal, except for the fact I got a nasty bronchial infection at six months, took penicillin, and had a severe allergic reaction on the tenth day of taking it. I broke out in hives from head to toe and was hospitalized for the weekend put on erythromycin and in 7 or so days I got a bit better. I recall being sick with that bronchial infection for almost two months in total, it really hung around. I am again mentioning this, because I wonder if this really took a beating to Brianne’s immune system. I was induced at 41 weeks. She weighed 8 lbs,7-1/2 ounces. During labor with Brianne, her head was faced the wrong way (up) and her neck was bent, and we almost did an emergency C-section, but she turned at the very end. They did use the vacuum for the final two pushes. Both her Apgar scores were 9. She has been on several homeopathy treatments, which we started back in September/00, and she has seen a chiropractor on several occasions. We give her supplements and vitamins to help keep her system as healthy as possible.

I need to know what has happened to my little girl and I am getting frustrated with people telling me that it isn't so important to know caused this, lets just try to get her well. Yes, I agree to get her well, but I surely do need to know what caused this in order to prevent it from happening further in her life and in my other daughter’s life. We first had a diagnosis of this being post viral encephalopathy with non-epileptic myoclonic seizures.

They are trying to rule out several degenerative diseases.

She now wears AFO (leg braces) and has a wheelchair for school. She has been 26 pounds for over a year! (She finally weighed in at 30 lbs last week, Nov/01). Big celebration at my house!!

I took Brianne down to Texas to see Dr. Gail Henry a Board Certified Chiropractic Neurologist. This was October 3/00.

January 2001

In Mid January, 2001 Brianne has started back up with her myoclonic episodes where she loses all muscle tone, then tenses her whole body while holding her breath, experiences intense myoclonic activity then it gradually eases off. These episodes last anywhere from 10 seconds to several minutes and seems to wear her right out. She has had as many as 30 of these a day.

February 2001

We were admitted back in hospital Feb. 2-9, 2001 as a result of these latest incidents. Another MRI, another spinal tap and several metabolic tests were including a skin biopsy to rule out several degenerative diseases all unable to shed light on the cause. In light of this regression we again are anxious to find treatment and of course an answer.

Since this last post, we were re-admitted again Nov. 22, 01 due to worsening of symptoms for another MRI, LP, Spect scan, and several blood and urine tests. All tests so far have come back normal, we are awaiting the result from the MRI. Her speech is improving at a great speed, which we feel is a huge blessing. She is a little angel throughout it all, she totally amazes me. She has more patience and courage than anyone I have ever met. She is my teacher and my hero. (She had been receiving OT, PT and Speech Therapy at Alberta Children’s Hospital every two weeks until she started school September/01, where she receives the therapies now.)

We were on Global TV here in Calgary on March 7th and 9th/01, asking for information to possibly help Brianne. We had an overwhelming response to our plea for help. Many people came forward with thoughts and ideas that might help us find an answer. Many people offered to help Brianne with supplements, therapy and many people phoned and emailed us prayers. It was awesome.

Since our TV appearance, Brianne has been seeing a Myofascial Release Therapist, PT., Hugh Gilbert here in Calgary. We have seen some encouraging results in Brianne's tone as well as her spirit as a result of this therapy. It is a therapy concentrating on the fascia, or connective tissue that acts like a web throughout your body. If there are “blocks” as a result of injury, emotional trauma, trauma from birth, etc. a person can suffer from many different symptoms. If you are interested in reading more about this healing technique, please visit http://www.myofascialrelease.com/.

Thankfully, Brianne has very mild cognitive delays and for that we are grateful. She has been tested and has a mild speech delay but she is clearly improving in this area as she now attends a special needs preschool program five mornings a week (since September 01). She loves going to school on the bus and thoroughly enjoys playing with all her new friends. She is a very bright and determined little person.

December 2001 (This is my favorite paragraph of this whole story!)

All of December has been great, we have seen little jerking episodes and she is making great progress physically, we pray we may be coming out of this nightmare. She has had very few myoclonic jerks and she has improved physically in that she can pull herself to stand, she can crawl out of her bed, she is crawling with increased strength, and more. Her speech is really changing, she is putting more words together each day and the words are pronounced very clearly. This is the strongest we have seen Brianne in two years, it will be two years on Valentines Day that she hasn’t walked.

March 20, 2002

Unfortunately, Brianne has had another relapse which landed her in hospital for another ten days from Feb 21-March2/ 02. She has lost all of the previously regained skills. She cannot use her arms and hands like she used to as she has regressed severely in fine motor control. The jerking episodes (or as I am now told they are most likely are simple partial seizures), were very traumatic and have changed back to being just in her arm and sometimes leg.

In hospital we saw those generalized type ones, arm, shoulder, diaphragm, leg, all right sided going at once.

Then the left side would join too. Nothing ever is the same. She is severely hypo tonic right now. She cannot roll over, or sit unassisted as she has lost control of her head and neck. She cannot use her right arm at all and has limited coordination and movement in her left arm. No changes in vocabulary thank goodness. Still very cooperative and as sweet as ever.

We did another repeat MRI of brain and spine. They also performed a muscle biopsy after ourdischarge to check for several mitochondrial diseases.

Medications we are trying at present are Clonazepam, .5mg tabs two in am, two in evening.

April 15, 2002

MRI results have come back as well as the muscle biopsy. The muscle biopsy for a mitochondrial disease called MERRF was negative.

The MRI unfortunately showed significant changes and on April 1st/02 we were informed that Brianne has a progressive degenerative white matter disease of the brain.

Leukodystrophy is the general name for this disease and at this time there is no treatment or cure. We have been told the earlier the onset of symptoms usually means the earlier these children will pass away from this horrible disease. Most do not live to the age of ten. There have been some spots of question in her white matter for the last couple of years, but have never “changed” in size or appearance. These “spots” are now 20-25 percent larger than they were in November/01, which clearly indicates progression and degeneration. They are uncertain at present if she is following one of the types that have names and descriptions.

They believe there are many unnamed forms of Leukodystrophy where the children do not follow symptoms or course of a known type. They call this Leukodystrophies of unknown cause. We are now waiting for enzyme results to rule out or determine MLD or Krabbe's.

May 9, 2002 (Mother's Day Weekend)

(This is a letter I wrote on a neurology forum I belong to. Yet another life lesson Brianne has taught us. It was a very special Mother’s Day weekend for this mother.)

We have had an ongoing constipation problem for the last two years. It was evident we were in deep trouble by the “rocks” we could feel in her tummy so I took her in to get some help getting “cleaned out”, as all the measures we had tried were unsuccessful. It was a special day for this mother.

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I know many of you knew I was having a huge (70) people over for Brianne's fourth birthday party on Saturday. So all was relatively good around here with all things considered, except for our ongoing constipation issue that has been a huge problem for about a month. I had tried many things to relieve the problem, enemas, glycerin suppositories, lactulose.

So I call the pediatrician on Friday and insist to be seen, as I could still feel these "rocks" at least two big ones on the left side of her tummy. So the nurse told me just to take her in that they didn't have the facilities to take care of that and they would send me there anyway. So luckily (due to a premonition I had earlier that day) I had almost all the last minute running around stuff for the party done, so I figured we would pop into ER, get the poop out and be home in an hour. WRONG!!!!!!!

We got the ER at 2:30 Friday afternoon, and got home last night (Monday) at 11:00pm. Yes, that is correct. You would not believe what was inside of my little girl. I saw the x-ray and almost passed out. She had her bowel completely compacted, to the left of that under her ribs there were about a large grapefruit size of it, then up in her chest (in the intestine) you could see two tennis size balls more. It was either try this Go-lyghtly by a ng-tube, or they were going to take her up to the OR and manually remove it.

Obviously I chose the Go-lyghtly route. It took until last night for it to clear out of her. The first big blow out was Saturday am at 7:30, there were THREE tennis ball size poops come flying out all at once. I couldn't believe it. I felt so awful for her, but of course she didn't even so much as make a squeak the whole weekend. Sorry about the graphic description, but I can't believe I just went through what I did. I am numb still. My nerves are beyond shot.

So, the party went on without a hitch. It was the most beautiful party I had ever been to, honest to God. I had no choice but to rely on my husband (his cousin came in town to visit, I bet he is sorry he chose this weekend, but we couldn't have done it without him). He basically set everything up the exact way I would have. The back yard was so neat with the tent, balloons, tables FULL of all the food our families and I prepared. I had to LET Go and LET God take care of it because I was completely unable to do anything. They let Brianne out on a pass so she could be at her party.

We got home about noon and people started coming at 1pm and I was in my housecoat with wet hair. Brianne was very quiet for the couple hours, hardly said a word, but she was there. We put her in the little tykes wagon and in her car seat so she was most comfortable covered with her favorite blankies to keep her warm. It was a beautiful day, the snow had almost melted, but the sun was shining and it was perfect. I was overwhelmed at the people that showed up. Only four or five people invited couldn't show, but the extra 10-20 that wanted to be there made up for them, and I think there was close to seventy to eighty people there at one point. Our backyard was full of our family and friends, but mostly full of people whose lives have been touched by Brianne's being here on earth in one way or another. I had to not think about that while I was there or I would have lost it.

It was very hard for many people to see her in the condition she is in. My one friend hasn't seen Brianne for months, and burst into tears when she saw her. I felt bad, she has kids of her own, and just couldn't believe it. We camp with them, they are a wonderful family, and I think she just was in shock. My mom could only stay to eat, then she had to leave, as it is too painful for her.

We opened all her presents last night when we came home from the hospital, she is happy to be home. I am too. I have never experienced anything so horrible as watching what I did this weekend. Brianne’s little body has been through the wringer just one more time. But like always, she will recover somehow. She is so amazing. She hashad her myoclonic seizures worsen as a result of this trauma to her body. She hasn't stopped jerking yet, all four limbs are going, her little neck right down to her legs. That alone is the most painful thing for me to watch. It just won't stop. Her face is all puffy today I am assuming from the IV fluids to keep her electrolytes in check.

I slept with her in those little single beds and woke up Mothers Day morning with poop all over me, like ALL over me. I wanted to die. I wanted to scream, cry, and laugh all at once. I didn't do any of those things. I got up, asked for a gown, got the bath wipes and cleaned myself off. Then for about the 30th time, cleaned her up, changed her bed, and crawled back in with her. As I crawled into bed with her, she said "Thank you Mommy". I said "For what honey?". She said "For changing bum". I just about fell apart. Here she is going through all that discomfort and she thanks me? Oh my goodness, what an incredible child. At that point I felt the most incredible feeling of love, warmth, and I at that point knew that I have been taught the most incredible lesson of unconditional love that a person could ever feel. I would never give that up for the world. This little girl has given me the most gracious gifts life could ever offer.

So that is what happened at our house on the weekend. We have colace to give her daily and will not let her go for longer than two days now. I think this disease is just running its course. As you all know the intestinal system is a muscle and Brianne has absolutely no tone anymore, so we may have some heavy decisions to make soon regarding feeding. I can't think about that today. I just want to get us to Disneyland next week, then we can think about it. I cannot imagine her going if she is in the condition she is in now. We may have to cancel. How sad is that going to be? My daughter Kayla will never understand that. Life really isn't fair, but no one said it would be easy.

June 9, 2002

Well, we made it down to Disneyland, California from May 23-30/02 with the Children’s Wish Foundation of Canada.

We had an amazing time! Brianne was not her best physically, and was not awfully fond of the characters, as she found them “too scary”, she told us. However, Brianne did enjoy this wonderful experience. Kayla loved each and every moment of our time in the “Most Magical Place on Earth”. We also visited Universal Studios, Newport Beach so Brianne and Kayla could see and feel the ocean for their first time, and of course we went to Sea World. We had terrific weather and we cannot wait to go again.

Briannes’ Auntie Wally and one of her favorite cousin’s Andrew came from Calgary to join us on our trip. Also, Auntie Hildie and Uncle Leron (who just had moved to California in March) met us there as well. It was so much fun. Six days was not long enough that is for sure. I can’t say enough about this trip, it was by far the most incredible experience of my life and I can only hope Brianne enjoyed it as much. I think her favorite part was swimming in the pool, she loves to swim. Seeing Disneyland through the eyes of children is something each and every parent must try to experience. Please visit our LINKS column and read more about Brianne’s trip on the Children’s Wish Foundation of Canada’s Website. Brianne is featured in one of their stories. Click on the NWT/ AB Chapters and you will find it there under “One of our stories” section.

We have received results from the enzyme testing for MLD and Krabbe’s. Both have come back negative. This tells us we are more likely to see Brianne have a Leukodystrophy of unknown cause. Hopefully, in time we will be able to identify which type she has therefore we will know what to expect, as once again, the unknown is what we are most afraid of.

We had Brianne’s first fundraising event yesterday for Bethany’s Hope Foundation (June 8), we held a garage sale (in the freezing rain), but had a great time! We had a pretty good turnout despite the weather and look forward to having another one in July. We had items donated to raffle off and people were more than willing to help us out, it was a great feeling. Finally, we feel we can do something to help Brianne and the other children! It might not be a Gala Ball, but we have to start somewhere. It was a lot of work, but also lots of fun and knowing what the money raised would go towards made it ALL worth it.

September 13, 2002

Well we have had a pretty good summer all in all. We were able to go on several camping trips (which Brianne and Kayla both love) and before you knew it we were preparing for school. Brianne has stabilized somewhat in that she has not particularly worsened in her illness, nor has she improved. However, she has regained some strength in her upper torso and neck region, she still is unable to sit unassisted. The seizures have been quite severe as she has days where she has had between 20-30 of them (those are the ones we see). We are on Tegretol again to try to control the seizures, but like always are finding that they are still the most prominent symptom in her disease. Her contented spirit keeps us positive but we know that her body must be so tired. She does ask frequently for naps as she gets tired easily. She has started back at school for her second year of Junior Kindergarten and seems to really enjoy it. She does miss her sister Kayla being by her side at school and on the bus, as Kayla now attends the school in our community entering Grade One. Very exciting for Kayla and now finishing week number two, Brianne appears to like the independence.

We had another Fundraising Garage Sale July 27th, and are please to report we had another great turnout. It wasn’t as busy as the first one we had, but we ended up raising more despite the numbers! I also have had an awesome response to the book “There Is No Them” written by local author Dawn Holman. With the help of many friends and family, I am pleased to announce that I sent Bethany’s Hope Foundation in London, Ontario our first lump sum of money we have promised half of, for the Research Lab. It feels good inside to possibly be able to make a difference somehow.

We have forwarded Brianne’s MRI’s and medical reports to the Second Opinion Program through the United Leukodystrophy Foundation in Sycamore, Illinois. We are hoping to receive a more specific diagnosis as a team of doctors and researchers from around the globe who study and specialize in all these rare forms of Leukodystrophy, will be reviewing her case. I will update this site as soon as we hear anything as far as a response goes.

We have another MRI scheduled in October to see how the white matter lesions are progressing. Hopefully, God will answer my prayers, there will be a miracle and these spots will be gone. That is my dream.

November 9, 2002

Wow, I can’t believe Christmas is around the corner. According to the weather here in Calgary at the moment, it appears too real for my liking!

I am a little sad to have to report we just experienced our first pneumonia. It was last Tuesday (September 29th) that I noticed Brianne’s coughing, that wasn’t really all that serious, but was hanging around for longer than I would like. It had been a few days of a dry irritating cough. Brianne rarely gets (normal) sick and knowing that pneumonia could prove to be quite serious for her, chose to go to the ER, have an x-ray to ease my mind and come home. Well this is yet another time that my motherly instincts proved to be too closely linked to reality.

Brianne’s x-ray not only showed pneumonia, but two large spots in her left lung. Double pneumonia was our diagnosis. I couldn’t believe it. They did the regular blood tests to see what type of infection it was, but that wouldn’t be back for two days. The quick test they do in the ER showed no signs of white blood cells indicative of it not being bacterial. She was given IV antibiotics and we were told to come back in eight hours for the second round. When we came back in the morning (early morning) Brianne’s condition has worsened and we were admitted. She had a 40 degree C fever that we couldn’t get down. We were very scared.

From all the research I had done and information I had received from the doctors, it was very serious if she were to get sick like this. I spent a lot of time in prayer asking God to help Brianne recover from this. We stayed in hospital for four days until I came down with the flu. They decided since Brianne was able to then take her medication by mouth, that we could both go home. We would both recover better in our own home. I couldn’t have been happier, the hospital is NOT a good place to have the flu! So one week later, she is recovering nicely.

The seizures have decreased by eighty percent. I am sure it was a viral infection and the two month’s prior that we witnessed increased seizures were most likely due to the virus. That is my opinion and the blood culture came back negative so it most likely was not bacterial. She is doing pretty good but mostly loved being back at school this week and of course was able to go horseback riding on Monday. We have put her in therapeutic horseback riding this fall. She goes once a week and just loves it. Her dad made her a really unsightly, but incredibly sturdy chair to sit in on the horse (made of a nursing pillow, foam and good old duct tape!) That is why our friends call Rick McGuyver!

The MRI from October showed “stable white matter changes”. So this to me says there is not a significant amount of progression in the white matter lesions. This is good news.

Still no word from the Second Opinion Program from Illinois yet. Will post when I get any news from them.

We have started Brianne on Lamictal, to hopefully get better control of the seizures. She was having over thirty seizures a day, it was awfully sad to watch, but more importantly, she was physically exhausted. Of course, like Murphy’s Law around here, she happened to settle down anyway most likely due to the symptoms of the virus settling down. So we hope to see good results from this in the event she flares up with seizure activity again.

We also saw our geneticist at the Alberta Children’s Hospital in October as well. He said Brianne’s ANS (Autonomic nervous system) is showing signs of slowly shutting down. All the pieces of the puzzle were placed together as I told him the events of the last year and a half. It was nice at least to have it explained. We just want to know and understand, that is all. This would include things like temperature regulation, bowel dysfunction (Brianne hasn’t been able to have a BM on her own since May), incontinence, skin changes, etc.

He also stated that clearly Brianne does not act like she is sick and complimented us on how well we have all adjusted to this tragic ordeal. I told him how much we continue to learn from her each day and how we try our best to just give her the best life we possibly can. He felt encouraged by her speech, her ability to speak her own mind and said he would continue to search for answers for us. That was nice to hear. We will never give up hope that someone will be able to help her. Until then, we will continue on doing what we are doing. Loving her and Kayla to the best of our ability. That is our role and our job as parents, the rest is up to the Universe and God.

Until next time….

December 16, 2002

I can’t believe Christmas is in just over a week!! Brianne is doing well right now, knock on wood! She has recovered fully from her pneumonia last month. She has started on another new drug from Belguim, Germany, Piracetam to help with the myoclonus (jerking episodes), so between that and the Lamictal (for generalized seizures), we are seeing some improvements. We have gone from 30-50 seizures a day to about one or two. Quite a difference and she is much more comfortable. Unfortunately, her left arm is showing more signs of regression, which is so sad. This is her main feeling of independence to be able to hold a pencil and draw her “V”, that is all she can do now. She was coloring in the lines.

We have sent some of Brianne’s urine to the Sick Kids Hospital in Toronto to test for sulfatides being built up. This would not change anything but tell us perhaps that Brianne has a rare form of MLD called Saposin B Deficiency. It is described briefly below under the MLD description. We will hopefully know soon. Also, Brianne’s new neurologist is going to test further into the mitochondrial diseases, as it is apparently true that Leukodystrophy can be caused by an underlying mitochondrial disease. She has been tested for a couple of these, MERRF and maybe one other. But as time has passed and symptoms have worsened, this may help them choose which types to test for. Again, will update as those tests are taken and results come in.

We have had great weather, which has allowed us to take part in some local Christmas activities where weather might not have allowed us to enjoy them. We have gone to our Calgary Zoo as they put on an incredible display and also we were able to have a special evening Dec 8th, as Brianne and our family was chosen to be taken around the city in a white stretch limo to see the lights. Here is a letter I wrote to our family and friends regarding the evening:

Hi everyone,

Thought you would enjoy this special picture of us Dec 8th at Airdrie's Festival of Lights. (There are more pictures to come, just haven't received them yet).

Brianne was the recipient of a special evening being driving around in a white stretch limo as we viewed the lights at Confederation Park then out to Airdrie's annual special light display.

It was a magical evening, one we will never forget. We were able to take a few extra people so we chose to take Brianne and Kayla's cousin Andrew, another cousin Bradley and Kayla's very close friend Kristi from school. Domonic, another friend came in the limo as well. We had quite an entourage following of about five vehicles. It was so much fun. I had people taking videos to help save the memories.

This most special evening was the fifth annual event called "Steven's Run", which began when a young boy was suffering from cancer, strongly desired to see the lights of Calgary from a stretch limo. A very generous and giving lady named Linda found out about his dream and she has taken her love for Steven one step further to offer his dream to one child a year. His name of course was Steven, he sadly passed away the following year of his dream. This night lives on in his memory and we would like to thank his family for allowing us to share in his life and his dream. We will always remember the special smiles, tears and joy we all felt Dec 8th, 2002.

Many special thanks to all of the volunteers that participated in the evening. Linda Redwood, our limo driver, was amazing. She made sure all things went off without a hitch, and then some. I know how personal this evening is to her and we hope she enjoyed it as much as we did. The Airdrie Traffic Division team that pulled us over at Balzac, a special thanks to you too. The kids loved the lights and the attention you created. My oldest daughter Kayla was the most diligent of the group being sure her seat belt was on at all times. When we saw we were getting pulled over, she said to me, "Mommy, I only took my seatbelt off for just a second to sit on my knees cause everyone else was!!!". I assured her it was ok, and that everything was alright. Then you presented them with their goody bags and hats, the smiles never stopped from there.

The Airdrie Fire Dept. was very accommodating, letting all the kids get into the fire trucks, it was just so incredible to see these children so happy. Brianne even let Santa sit next to us in the Fire Truck as we were taken to the Festival of Lights. Sparky the Fire Dog was neat she thought, as long as he was at arms length (he fared better than Disney characters though, she wouldn't let any of them near her).... The rest of the night, from having coffee at Tim Horton's (because we heard Santa hadn’t arrived in his sleigh yet) to the last time around on the train ride (we talked Santa into giving us three trips around!), was completely amazing. We haven't stopped talking about it yet and like I said will remember it forever.

What special memories all of the volunteers have created for our family and friends.

From all of us, we would like to wish you all a very Merry Christmas and a Happy New Year. May all your dreams come true and more.

Patti, Rick, Kayla, Brianne, Bear and Rocky

http://www.airdriefestivaloflights.com/

click on Special Events, then click on “A Special Night” for more pictures of our most incredible night of lights and memories.

February 9, 2003

Brianne has been in and out of the ER ward since the end of January due to another upper respiratory infection. The x-ray isn’t perfect but they said it isn’t pneumonia. I feel differently. She is very sick. She is very weak. She can’t cough because she doesn’t have the tone, so it is difficult for her to remain comfortable.

February 13, 2003

The following are posts I made to friends on a neurology forum I belong to during Brianne’s final ten days while in the hospital:

Hello,

I have to make this very short.
I am requesting two things from my friends here.

a) Please say a prayer for Brianne and for us as she is in ER with an NG tube to stop her from vomiting, she hasn't stopped throwing up since 11:30 last night.

b) Please send me any information if you can about loss of vision for eight hours (so far). She had a seizure (after throwing up for the first time last night) and when I was reading to her after we cleaned her up from the mess, she told me to "turn on the lights".

Does this mean her vision is gone? I am petrified, and we are getting a CT scan shortly. I think the vomiting and the vision loss means something else. Please, Please help me with your thoughts. I want to be prepared and thought the forum would be a great place to start. I am so scared for Brianne. She won't shut her eyes, she doesn't understand what has happened. Neither do I. I SO hope this is just temporary. The Dr.s can't and won't say anything until neurology sees her and of course we get the scan.

Will post later.

Please send healing energy to my sweet, sweet Brianne.

Thank you

(Later on that day)

I am in the worst possible position a parent could possibly be in. Brianne's condition has severely deteriorated, she was in ICU in a make shift room, we have had to make some unbelievable decisions, regarding Brianne's care.

She still cannot see, throughout the night she did lose all responsiveness to anything, but is now coming around a bit. We are setting up a room in our hospital, palliative care type setting to make room for our family. Hopefully things will turn around, miracles do happen.

I don't know what I am running on, it must be pure hope... I know there are many of you who truly CAN imagine what I am going through, all I can say is thank you for sharing your journey with me. I have admired each and every person who has lost a child and they still continue to support us and guide those of us here. Those memories have flashed in my head all night and day. This is too unreal.

Prayers still appreciated.

Thanks again.

February 14, 2003

Wondering….Hmmmmm…. WHY we are always in the hospital on Valentines Day?? I just had a couple of hours sleep and the nurses came to help me do something about Brianne's temperature, we got her settled and thought I would come and write to update you.

I again, thank you all who have written your most appreciated thoughts and concern to our family.

Brianne like I said is in a room in what we call clusters here, (like wards maybe) and normally they are two patients per room. They have made a room for our family to be present and have visitors without being in ICU. We don't need the care in ICU, just need support care.

It is quite nice, there is a couch and it folds into a bed.

So here is me, go figure...for four years I have dreamed each night I have stayed here to be able to sleep in a bed where I could actually lay on my side and if I wanted to even turn over! So I get my wish and what do I do? Sleep with Brianne on the hospital bed. I just had to. (I only laid with her until she got so hot I was on fire too!)

Her seizures were also keeping me up and I desperately needed just a bit of sleep so went on the couch and got some, so feel quite good actually if that is at all possible.

So what is happening at present is she still cannot see and from what the doctors have said, light or much else. She has lost all swallowing ability, so she is drooling quite a bit, and has a horribly dry mouth from being so hot and from the suctions, etc. She can't drink or eat anything so is a bit cranky about that. This really shocks me how fast this all happened. One day is not enough time to comprehend all this at once. However, we will have to accept it and learn to tube feed (if of course we leave the hospital). At this point, tube feeding is the least of our problems and concerns.

Mentally, she is still comprehending and communicating with us, and to my awe and surprise hasn't said one thing about not being able to see. I keep asking her if it is light or dark (hoping of course she will say it is light now), but she up to this point has only said it is dark. She wanted to watch the movie Spirit, (which ironically was the last movie she watched at home Wednesday night) and had no problems listening and even letting us know what was coming up next. She has once again impressed us all with dignity and grace like she usually does. I don't know too many people, (mainly talking about myself) who would handle what she has without freaking out. Especially losing her vision, I am assuming she is a bit shocked by the whole thing. But hasn't complained nor asked "why she can't see?".

Her O2 level is good, her heart rate and breathing is ok now. Yesterday she was totally unresponsive and her breathing was deteriorating to only taking intermittent breathes and was clearly losing control of breathing until we gave her Dilantin in her IV to attempt to get some control over the seizures. It did help and she seemed to bounce back a bit. Then overnight, she has changed again in not being as responsive, but not as severe I would say as yesterday.

I think that is more than enough information for some of you. I know this must be hard for many of you to read or to comprehend. I just know being able to write this has helped me.

I will update as changes occur.

Thanks again,

(A little later)

I know many of you want to know how she is doing, I had about 5 mins so thought I would let you know there has unfortunately been more regression this am.

She isn't responding to me like normal at all. She didn't sleep more than 2.5 hours last night, this is not good. We are going to try some Ativan again I think to try to stop the seizures. She will not close her eyes.... it breaks my heart to imagine how scared she must be not being able to see.

I was thinking last night now the movie “Spirit” was the last movie she watched on her TV. She like someone wrote has the most incredible "Spirit" of anyone I know... She chose a great movie for us to remember her by. The last person she saw was her daddy, (she now calls him "Papa Bear"). That is so awesome, (I of course got my nose a bit out of joint), but I have been blessed with spending so much incredible quality time with Brianne while in hospital. She still cannot see, I keep hoping it will come back. She is doing this strange whining, and isn't comfortable for some reason that we do not know. She was answering YES or NO answers to us, now she won't. I will let you know what we do later if time allows.

It is 6am, I just showered, (was getting weird looks from people ....) Feel (and smell) much better.!!

February 15th, 2003

Our little Angel slept wonderfully last night, I was able to sleep too right beside her, she was so very still only moving a couple of times. Her snoring is a bit much though... Rick went home last night to be with Kayla-boo and he will be here this morning. My cousin's wife stayed with me, I didn't want to be here alone.

Well my dear friends, we may have just a few short days left with this most incredible daughter of mine. She was able to tell me she loved me last night. Melted my heart, literally. I was really afraid she wasn't going to say anything again, then she surprised me (like she always does).

She listened to Spirit again last night, and Dora the Explorer. Her two favorite movies. She will have a wonderful, quiet, and special time with us for the next few days. There will be no more needles to check levels, no more MRI's, no feeding tubes, no more tests. Brianne has been through enough of that.

She just has the NG tube for her seizure meds, that is it. She looks so much more at peace. The nurses are no longer coming in to check vitals, there is no reason for that.

It was a beautiful night.

I just want to thank you all again for all your support, love and advice over the last year and a bit while I desperately tried to find a reason and explanation for Brianne's condition. I know and always have known that Brianne had a completely different reason for being here. Kayla now will be able to shine, like she has in the past. Her undying love for her sister will carry us all through, I think Brianne is glad that Kayla will have her time now. They are so very close, this is going to devastate Kayla as it will many, but she will be fine. We have to be strong for Kayla. Now we will have Brianne waiting for us to join her after she is finished her mission here on earth. She isn't finished just yet.

I am going to back to the room now. I may be having someone else post here, I am sure you can understand. It may be me, who knows what this day will bring. Love to you all and will keep you updated the best I can, k?

Love and Hugs,

February 19, 2003

I have no clue what day it is..

Brianne is very peaceful, I know you all need to know this..

She is sad today, very weepy and her little tears won't stop. It is breaking my heart more if that is possible.

There will be no MRI, no more tests, nothing. We might bring her home, have a meeting shortly to discuss home care to help us out. I can't do it alone.

She is very still, very calm.

She feels your love and prayers, we all do.

Kayla is ok. She is at school today.

My sister is here from Ottawa, that is a huge blessing. I will update if I can.

February 22, 2003

(Posted by a dear friend Jackie, from Wales)

Patti just called me, Brianne passed away 9:40 am their time. Brianne passed away quietly whilst listening to the music from the movie 'Spirit'.I suggest you all listen to the song 'Here I am' and 'I will always return' as a tribute to Brianne.

Patti sent me a book a while ago and in it was a little story.

The line goes:

" There is no such thing as death. It's a bridge to the next step of the journey".

I thought it was very beautiful and wanted to share. Patti said that all you guys on MGH have been great strength for her and her family. Your prayers and love have been felt by all the family.

Patti, may little Brianne now run and play with all the other little angels. She will be watching over you, as you said, her spirit will live on.