Well, just over 2 weeks ago our miracle baby Zakariya received this heart-breaking news - He was diagnosed with the extremely rare Spinal Muscular Atrophy (SMA Type 1).
SMA affects the central nervous system and voluntary skeletal muscle movement. Consequently, affecting many basic motor functions, some of which are walking, leg/hand movements and feeding.
After progression, SMA sufferers lose the ability to swallow, breathe and can go on to eventually die.
A message from Baby Zakariya:
My name is Zakariya, (Zaki for short) I was born on the 11th of October 2020 and this is my story -
My mummy and daddy’s tough journey started 5 years ago when they were told that they could not conceive, many tests, and failed rounds of IVF later they decided to leave it to fate. Amazingly one year later I made a surprise natural appearance. They say I am a miracle, but I believe that good things come to those who wait.
The 18th of May 2021 changed my life forever. At only 7 months old, I received the devastating diagnosis that I have the extremely rare, degenerative, and life-threatening disease SMA Type 1 which does not have a cure. Regardless of my diagnosis, I consider myself incredibly lucky because there is a life-changing treatment available, the name of this treatment is Zolgensma. This gives my mummy and daddy a lot of hope for a happier future for the three of us.
Sadly, it is the most expensive medicine in the whole wide world.
The NHS automatically funds this life-changing treatment for up to 6-months-old. Unfortunately, I narrowly missed out on this opportunity as I was 7 months and 1 week old when diagnosed. My consultant said if she had the choice, she would give me Zolgensma tomorrow as it will provide my body with the missing gene, which is a one-off IV infusion.
This awful disease has already stolen my legs and has sadly started to take my arms too, I am very weak and slow, however, the treatment of Zolgensma has made it possible for children just like me to live past their 2nd birthday. I know that life will always be different for me and I have a long road ahead - I need your help through this scary journey.
The sooner I receive my treatment the stronger I will become and the least time my life will be in danger. I hope and pray that you read my story and follow me on my journey to live a long and happy life.
When you look at me, I look "normal", I even smile, laugh, and sometimes cry but my body has and could at any point continue to give up on me. My life hangs in the balance and could be cut short at any point with something as simple as a cold or a flu.
If 200,000 angels LIKE YOU can donate £10 each, I will have a second chance at life. I understand that £10 is a lot of money but every penny counts, even if it is £1 or a share to your friends and family I will be eternally grateful.
A heart-breaking message from my mummy and daddy:
Zakariya is our little miracle and always will be. We are a strong and positive family. We ask for your help in raising £1.9 million for this incredible lifesaving drug and aftercare, which will give our baby boy a second chance at life.
When given the news that we would never have children, we made the decision to let go of our ultimate dream of having a family. We decided to go travelling and Dubai was the destination, far away from our struggles. Little did we know a miracle was on its way to us, 2 months in we found out we were naturally pregnant. Zakariya made his appearance in October and we decided to return to the UK.
Zakariya has missed all his milestones, he has never rolled over, sat unassisted, he has a little strength in his head, but it is very tiring for him to hold for long, he has completely lost the ability to lift or move his legs (only his feet move) and his arms are considerably weaker. There is still a huge risk of respiratory failure, ultimately leading to death.
Zolgensma has been extremely successful and can show significant changes within a couple of days to weeks. With time, some children have gone on to take their first steps.
We will do whatever it takes to help him have a better quality of life. It is a difficult thing to read but as first-time parents and having the gift of life given to us and the possibility of it being taken away, we do not want to be on this earth unless we have done the upmost for Zaki and if that means we must do everything in our power to get this incredible treatment for him, we will.
When we reach our target, we will have several hospitals to choose from either within the UK or in the US (Boston Children’s hospital) - The current US quote stands between $2.2 - $2.9 million which does not include travel expenses, accommodation and aftercare costs.
Please help us allow our baby Zaki to have the best life possible.
Please allow us to have him with us for as long as possible.
Please donate as much as you can.
Please spread his story as far and wide as possible!
Let the world help him!
Let us ALL stand together and give this incredibly brave and one-of-a-kind boy the best gift of all… The gift of life - Something which we all take for granted every day. From the bottom of our hearts, we thank each and every one of you for reading, sharing and donating what you can - It goes beyond words the gratitude and appreciation we have for you all is unfathomable.
We simply owe you our lives.
Lots of love from Baby Zakariya, Tara & Mo.
Fundraising team (14)
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