Oscar Waterman is an incredibly special, beautiful little boy who came into our lives in November 2015.
Shortly before his first birthday, Oscar was diagnosed with Spinal Muscular Atrophy type 1. SMA is a rare genetic disorder, of which type 1 affects approximately 150 children in the UK.
SMA is an incurable, progressive neuromuscular disease which see’s children regress in their physical abilities.
Oscar has never been able to sit independently and we will never see him crawl or walk. Within the next few months, Oscar will depend on an electric wheelchair to get from A to B. SMA will progressively steal Oscars physical abilities, leading to paralysis. In time, he will no longer be able to swallow food and drink, he will lose his ability to talk to us and eventually, he will lose his ability to breathe on his own.
Historically, without medical intervention, 95% of children with SMA type 1 have not survived past their second birthdays. However, with modern medical intervention, we hope that Oscar will live to be at least 10 years old.
We are fundraising for two fundamental reasons:
- Personally for Oscar
- Donations to Great Ormond Street Hopsital, SMA Trust, The Lanterns and Whizz-Kidz Charity
For now our primary goal is to fundraise to provide Oscar with once in a life time opportunities and to help fund his care and equipment which we hope will make his life as pleasant, fun and comfortable as possible. For a little boy of Oscar’s age who has such limited mobility, it can be very frustrating for him and we aim to purchase special toys and equipment specifically adapted for Oscar’s needs, which we can then pass on to other families affected by this cruel disease.
In addition, we have been overwhelmed by the incredible medical care and support we have received from Great Ormond Street Hospital, The Lanterns specialist centre which is solely charity funded and Whizz-Kidz charity, who will soon be providing Oscars first wheelchair. We would also like to make a contribution to the SMA Trust, who work tirelessly to raise awareness and provide funding for research in the hope that this horrific disease will eventually no longer exist.
Oscar has always been a beautiful ray of shine, radiating positivity and brightening the life of everyone he meets. Even though he has started to realise that he moves differently to other children and is losing the limited abilities he once had, he continues to be the bravest, happiest shining star we have ever known. We are truly blessed to have him in our lives and are determined to make his life as wonderful as possible.
On Sunday 7th May, 12 of us from Principal People are running in a “Tough Mudder” event for Oscar, to raise money and awareness for the disorder. This is one of many ways that we are aiming to fundraise for Oscar and all the incredible charities who are supporting him throughout his shortened life.
I am so grateful for all the love and support my amazing family and friends have given us so far and anything you can do to help is cherished by us all.
Thank you so much from Tara (Mummy), our little pumpkin Oscar and his family.