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The Annabelle Rose Foundation for Spinal Muscular Atrophy

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belle

Me and my partner planned to have a baby in 2007 and I fell pregnant easily. We were over the moon, the baby was due on the 24th of May in 2008, and life couldn't be better. My pregnancy was a textbook case and I was eventually induced at 2 weeks overdue. 5 hours later, our beautiful Belle was here, all fingers and toes, and we were sent home happy that our baby was healthy.

 

When Belle was 4 and a half months, I took her to a baby clinic to got her weighed as I did every week. Next to us was a 3 week old baby, screaming and kicking her legs up and down. It suddenly occurred to me that Belle didn't do this. (Well she did cry, but it was never loud and she never screamed. In fact her cry was really distinctive, and she did move her legs but she would never kick them hard, her movements were very gentle.) I picked her up and supported her head like I always did and thought 'Belle should be holding her head up on her own by now'. She could hold it, but not for very long. I mentioned my concerns to the Health Visitor and she thought maybe Belle was a little lazy, but told me to make an appointment with my GP to get her checked out, which I did.

 

My GP examined Belle, and said to me "Are you alright?" and I remember thinking, 'why are you asking me that?'. She said she was very concerned about how floppy Belle was. Floppy was the right word, Belle was floppy. She referred me to our local children’s hospital to a specialist.

 

I had a phone call the next day with an appointment for the following day which only added to my worry of how serious this could be.

At the appointment 2 specialists were there to look at my baby girl. They didn't really do much, just asked me to undress her, and the doctor used his ID card to try and get Belle to follow it. While he did this, they also checked her reflexes. They asked me a few questions, such as "Did Belle cry when she was born?" My partner answered "No, she didn't". The doctor then said "Did you get reduced movement towards the end of the pregnancy?" I answered "No, I didn't". He then said to us "I think Belle has Spinal Muscular Atrophy (SMA)". I had never heard of this, but it sounded serious. So I asked him if it was, and he replied "Yes", and went on to say that there are different types of SMA, 1 2 and 3. The earlier the symptoms, the more severe the case, and that Type I babies don't usually survive past the age of two, and that type II can live into adulthood. He also told us that there was no cure, and that my baby would probably die from a chest infection as they are not strong enough to cough and clear secretions as their muscles are so weak. He was also unsure of which type Belle had, He felt that she could be on the cusp between type I and type II. He said if Belle sits up by herself, she would be Type II . I was told that there were 100 cases in the UK every year, and that 1 in 6500 babies born are affected. Babies are affected due to the fact that both parents carry the defective gene for SMA, and that 1 in 40 people in the UK carry this gene. There is a 1 in 4 chance in each pregnancy of the baby being affected. Belle was so attentive and smiling all the time we were there, we just couldn't take it in.

 

We were devastated, all our hopes and dreams were shattered. We were given some information about the Jennifer Trust which is a charity that supports families with SMA. We were told that Belle didn't need any more care than a normal baby at this stage, but that the doctor would see her in a few months and request a sleep study to make sure her breathing was okay during the night. A physio would also visit to check her over.

 

After a week I called the Jennifer Trust and they were so helpful. They sent us a toy pack for Belle and lots of information. As I read through the pack, I began to find out the hard facts of SMA, and that if Belle did in fact have Type I, she was unlikely to see her first birthday. The more I read, the more I thought that Belle did have Type I, there were a few things that differed but most things were the same. I was also very aware that Belle did in fact need alot of care that was very different to a normal baby. They were always at the end of the phone for me and I felt they were the only people who really understood.

 

The next weeks were hard trying to be positive. We were wishing for a miracle, the amount of times I typed "miracle cures" into Google is uncountable; we were just looking for anything that would help us, that would help my beautiful Belle, save her from being taken away when she was so loved by us. If I'm honest, I never thought she would go. I thought she would be the first baby to survive SMA.

 

Belle is the most beautiful baby girl I have ever seen. She had the biggest blue eyes, and her eye lashes were so long. She had ash blonde hair, and a smile that melted your heart. She would giggle at the silliest things, I always tried never to cry in front of Belle and I would watch her sleeping and feel so helpless, because I couldn't save her - that is why I would cry, she never complained, and she loved to be cuddled. She used to sleep in between me and her Daddy, as I wanted her to feel close all the time for her short stay. I once read another Mum's story, and she described SMA to be like someone holding your hands behind your back whilst being stabbed in the heart - this is so true!

 

Then, on Christmas Eve 2008, Belle started to become unwell. She had a fever and was very pale. We took her to A and E; her oxygen levels were nearly 80% and they should be no lower than 95%. She was put on oxygen and a x-ray was done. The results confirmed our worst nightmare - she had a slight chest infection. I just started to cry with fear, and Belle looked at me and began to cry. I felt awful as my fear had given her fear, she trusted me completely, so I stopped immediately. Things just got worse and worse as the days went on, we were put on a ward and within hours moved to High Dependency. More tubes came every day, then in Intensive Care, even more tubes and monitors. We learnt what each beep meant, when it was a serious beep it was horrible. There are two moments in hospital that I will never forget. One was on Christmas day, when she was able to come off CPAP for an hour, and we were able to cuddle her, which was my favourite thing to do. And the second was the smile she gave me and her Daddy with a tube in her mouth in intensive care; this was her last smile and also the last time I would see her awake, although I didn't know it at the time.

 

After four days, the doctors gave us the devastating news that there was nothing they could do for her, as they were forced to use so much pressure to get air into her lungs for such a long period of time, she would never have been able to breathe on her own, even if she had got over the pneumonia. I couldn't take it in, I just kept thinking there must be something else they can do. Selfishly, I even thought 'I don't care if she has to have a machine to help her breathe forever' because I didn't want to be without her, but we had no choice. We had to take the ventilator out. Me and her Daddy cuddled her as she passed away in our arms on the 29th of December 2008, at 6 months and 3 weeks old.

 

Since Belle passed away I have met other Mums in the UK  who have lost their babies through this devastating condition. This has helped me so much, and we now have a huge support network on Facebook. SMA is the number one genetic killer of babies under the age of two, and yet nobody has even heard of it! Even my GP didn't know what it was, and this saddens me. I made a promise to Belle that I would fight SMA and raise awareness until people hear me and find a cure.

 

 

Belle has taught me so much, more than I have ever learnt in my whole lifetime...

 

We love and miss you Belle so so much! You are forever in our hearts.

colchester-hall

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Belle's Story, in her mummy's words.....