Six months ago we never would have thought but our lives changed forever. Bella developed a bad chest infection and after a week of not really wanting to do much apart from sit on the couch Bella did not want to walk. She would scream like she was in pain and take really slow steps and hold on to everything for support. We decided to take her to the GP who moved her legs around and said it was probably viral and to keep an eye on it.
Another week passed and Bella wasn’t getting any better she was refusing to walk anywhere and when she was stood still she had an unstable gait. This worried me I thought was it her ears, was her balance was off? So back to the GP again as we had googled something called cerebellar ataxia which can occur after a viral infection. The GP had never heard of this so we were told to go to A+E. After X-rays of her hips came back negative they wanted a CT scan. Being a radiographer myself I was really worried as you hear stories of tumors etc so after an anxious wait it was then that the doctor gave us the news that they had found changes in her white matter but the good news was it wasn’t a tumor!!
Well at that point I cried my eyes out and Peter was just in shock we was just not expecting it at all. She was perfectly fine a few weeks ago! However they gave us a bit of hope as at this point they said if it was viral they could treat it with steroids and that would be it.
After several days in hospital with it being a weekend we had to wait till the Monday for an MRI scan this day was to be the worst of our families lives. Her scan was at 3pm sedation worked a treat she was away with the fairies. I remember her coming out of her scan early and I said ‘that was quick’ he said we didn’t have to do all of her spine. Well in my head I thought oh that’s good news maybe it is just viral, little did I know it wasn’t.
Then the wait came,hours and hours passed I was thinking it doesn’t take that long to report a scan and then the worry started to set in. Something wasn’t right it’s taking too long. It was around 7.00 pm when the doctor came to us. Drew the curtain round and told us the news that Bella had some sort of metabolic brain disorder and her changes were extensive and that she probably wouldn’t have more that 6 months to live!!
Well it’s a bit of a blur now but I remember having a full blown panic attack.
I had to run to the toilet and be sick and me and Peter were just sat there holding hands saying it can’t be right. How can this be true! We had never cried so much in our lives. That night was the hardest ever, Bella was still fast asleep from the sedation and I was awake all night looking at her thinking why?? Was it a dream, I’m going to wake up and it’s not true. Then thinking about her brothers and sister and what will they think, our families. Just looking at her fast asleep, an angel. What had she done to deserve this, what had we done??
Then it came to telling our families it was heartbreaking telling our mums and dad. For them to understand what was going on and telling them she had 6 months to live.
I just remember crying on the phone and not being able to speak I was just hysterical. We were discharged the next day and were just left to deal with it and the thought of our daughter dying in 6 months was unbearable. Then came all the bloods, lumbar puncture and the waiting! Every result that was coming back was negative and we were so frustrated.
Finally, after contacting Nyree Saxby, we decided to send Bella’s MRI scan to professor van dear Knaap in the Netherlands to see if she could help. Within a week she had confirmed vanishing white matter disease (VWM) but deep down we knew she had it as after lots of research and the fact that when she had a fever and was ill she got worse.
I myself felt alone I had no one to speak to about it, what to expect, what to do, how to cope. We hadn’t planned on this, just weeks ago she was pushing her pram round the park and now she couldn’t walk.
Therefore, we decided to make Bella’s life as fun as possible we gave her everything she wanted, took her to lots of fun places and my friends from work set up Bella’s Fun Fund. Now we are paying for it though as she is very demanding :) (LOL).
Then after speaking to Nyree and Donna and joining the VWM Family Forum we began to feel like we were not alone and the feeling of hopelessness had gone and turned into something positive. We would do anything and everything to protect her the best we could. Getting her a helmet so she doesn’t bang her head or making sure she doesn’t get ill etc gave us something to work at.
Now eventually we feel like we are getting the help and support we need but it’s been a tough ride. Sometimes we have good and bad days and I feel jealous when seeing other children running around the park or climbing up things — thinking Bella will never do that again or seeing children outside — college thinking that will never happen to Bella!
At the moment Bella is pretty stable she hasn’t got worse for a couple of months which is good. She can no longer walk on her own. Few month ago she had a fever and after that she deteriorated. Prior to that fever, she could use a walking frame. Now, she tends to crawl and bunny hop everywhere. Also, she isn’t really good at climbing up things now like stairs as she is very jerky. She has hand tremors. Thus, feeding herself with a spoon is difficult at times and she needs help. Due to the fact, she’s not walking, she has spasticity in her feet so she wears splints at times. However she is such a happy little girl who loves nothing more that being with her family and friends and playing with her toys as well as eating ice cream!!
It’s taken time for myself and Peter to come to terms with Bella’s diagnosis and at different rates. But now we just want to find a cure for Bella and the other children with VWM. The thought of Bella not being able to do anything for herself scares me so if we can stop it before it happens we would do anything possible.
To read more about Bella see — http://www.savingbellamorris.com/
Small amounts of money can have outsized impact in the world of#VanishingWhiteMatterDisease (VWM). Because #leukodystrophies are so rare, therefore research relies heavily on private donations. Even if it’s a small amount, please consider donating: https://www.gofundme.com/2547ystu
Written by Bella’s mom