Support Oscar the Brave to live his best life - Raising funds and awareness of SMA Type 1

Meet Oscar, our beautiful baby boy born on 20th August 2022.

At 10 days old he was diagnosed with a rare and life limiting condition called Spinal Muscular Atrophy (SMA) Type 1. A day that we will never forget and that turned our whole world upside down.

SMA Type 1 is a degenerative, muscle wasting condition that affects a baby’s ability to move, swallow and eventually breathe. SMA babies are born without a specific critical gene (SMN1) that creates protein which sends messages from the brain to the muscles to tell them to move, without this gene muscles get smaller and eventually waste away. Without treatment, the life expectancy for Oscar would have been less than 2 years old.

At 24 days old Oscar received lifesaving gene therapy (Zolgensma) at Manchester Children’s Hospital. Zolgensma therapy was a one-off treatment that works by replacing Oscar’s missing SMN 1 gene with a working copy. The therapy prevents the progression of the disease, however it cannot repair any damaged or lost motor neurons. Oscar will always have SMA and with that will come a lifetime of challenges as there is no cure. We are eternally grateful to the NHS, and the Neuromuscular teams at Leeds and Manchester Hospital, as without gene therapy Oscar would now be fighting for his life. Zolgensma is a relatively new treatment, and whilst trials and studies have shown some positive outcomes for children each child responds differently, and Oscar was very symptomatic at birth.

Oscar is a brave little warrior, in his short life so far he has been treated in 4 different hospitals in 2 different countries, stayed over 20 nights in hospital for tests and treatment, received a 4 month dose of steroids, had blood tests taken over 50 times and is enrolled onto a clinical trial in Italy for a secondary treatment called Spinraza, which although available in the UK, this is not funded by NHS England. 

Oscar is a lovely, smiley and happy little boy despite his devasting condition and tough start to life. As we write his story (Feb 2023) he’s feeding well, his respiratory function is performing adequately but he does have night-time ventilation support and he is slowly gaining movement in his arms and legs. The mobility gains are slow, and his neck and head control remain weak but we’re hopeful of progress as we move into this next phase of his rehabilitation. 

As Oscars parents we’re determined to give him the best quality of life possible. The gene therapy treatment alone is not enough, the hard work for Oscar starts now! To get him moving he will need intensive blocks of physiotherapy throughout the year at specialist clinics in the UK and abroad, weekly private physio, weekly hydrotherapy, monthly osteopathy and specialist orthotic equipment which is not available on the NHS - Mobility aids are NOT funded by the NHS for children under 3.

We are also committed to raising awareness of this rare condition and the need for new born screening in the UK, something that is standard in other European countries and parts of America and Canada. We do not want other families or children to have to suffer in the same way.

The reason we have created this page is to raise funds to support Oscar’s rehabilitation, improve his quality of life and support the brilliant work done by SMA charities. It is estimated that over the next 1-2 years the following costs will be incurred:

 -Weekly private physiotherapy - £60-£100 per week 

- Intensive therapy blocks – up to £5000 each

- Custom made orthotics - £2000 and require updating every 8-12 months

- Custom made wheelchair for under 3’s - £2000

- Vibration plate for at home physio and to stimulate muscle movement - £4000-£6000

Throughout 2023 we, along with friends and family, will be taking part in various challenges to support our fundraising for Oscar – Updates to follow!

Thank you for taking the time to read Oscar’s story. We look forward to keeping you updated with Oscar’s progress and our fundraising campaign.

If you would like to follow Oscar’s journey please head to Instagram and search @Oscar.the.Brave_sma1

Who is Tree of Hope?

We’re fundraising via Tree of Hope to provide donor reassurance, the funds are held in a trust by the charity and can only be released for therapies and equipment to improve Oscar’s quality of life. Gift aid can also be claimed and corporate donations can be made by businesses. A percentage of the funds raised also goes towards the charity. 

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs. If we raise insufficient funds, or surplus funds, then the funds will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objects.  If in those circumstances we are unable to use all or part of the funds for the benefit of our child in accordance with Tree of Hope’s charitable objectives, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.