Fundraising for Oakley

Support Oakley in Overcoming SMA with Vital Therapy and Care

Meet Oakley, a brave and joyful little boy with an infectious personality and a remarkable strength to face the challenges of Spinal Muscular Atrophy (SMA) Type 1. SMA is a rare and life-limiting genetic condition that causes progressive muscle weakness. At just 14 weeks old, Oakley received gene therapy which, although not a cure, gives us hope for altering the course of his condition and providing him with the best possible life. Oakley will likely need full-time care for the rest of his life, which my wife, Amy, provides—an incredibly demanding and essential role that also includes working with Oakley’s multidisciplinary team and managing all of his medical, logistical, and care needs.

The Impact of SMA and How You Can Help

Oakley is full of life and continues to thrive thanks to the incredible care he receives from Charlton Farm Children’s Hospice and the NHS specialists supporting him. He’s making steady progress, but we face ongoing financial challenges as we strive to provide Oakley with the best opportunities to achieve greater independence. We are seeking your support to ensure Oakley continues to receive the vital treatments, equipment, and care he needs.

Home Adaptations Completed with Family Support

Oakley’s home has been adapted to be fully accessible, with a new bedroom, bathroom, and wider doorways to ensure he can move around with ease. Thanks to a grant from the council and generous family contributions, we’ve also created a wheelchair-accessible garden to give Oakley more freedom to play and enjoy the outdoors.

Ongoing Financial Needs for Oakley’s Care

While Oakley has made incredible strides, we need further support to continue his therapies and provide the equipment essential for his growth. Here’s where your donations can make a huge difference:

1. NAPA Intensive Physiotherapy Course (Sep 2024)

Oakley has the opportunity to attend an intensive physiotherapy course at the NAPA Neurological and Physical Abilitation Centre, a world leader in this type of therapy. This course could significantly reduce future interventions and surgeries. The total cost is £5,865, and we’ve already secured some of the funds through our Tree of Hope/JustGiving fundraising pot and family contributions.

2. Ongoing Private Physiotherapy

Oakley currently receives NHS physiotherapy, but he requires regular private physiotherapy sessions to achieve his goals and maximize his potential. We need to raise £850 per month for two sessions per week, totaling £10,000 annually. These sessions have been instrumental in Oakley’s development, helping him work towards greater independence.

3. Orthotics and Equipment

The right orthotic equipment is crucial for Oakley’s development. Unfortunately, the NHS can’t provide the specialized equipment he needs, so we are covering these costs ourselves. Some of the orthotics Oakley requires include a spinal brace and lower body orthotics, which help maintain his posture and mobility. The cost of this equipment has been around £5,529 and will continue to rise as Oakley grows.

4. Adapted Vehicle for Oakley

Oakley’s mobility needs require an adapted vehicle, and we’re working to fund this through the Motability scheme. The total cost for the deposit and adaptations is approximately £9,000. This vehicle will enable us to safely transport Oakley and his equipment, ensuring he can access essential services, school, and social activities.

Why Your Support Matters

Parenting a child with SMA is both a full-time job and a 24/7 challenge. The physical and emotional toll on us as parents is immense, but it’s made a little easier by the community that rallies around us. Any donation, no matter how small, will make a real difference to Oakley’s progress and give him a better chance at independence and a high quality of life. With the right interventions now, we can help Oakley avoid more invasive treatments later, improving his mobility and overall well-being.

SMA is a unique condition, and although Zolgensma has given us hope, ongoing therapy and the right equipment are vital in helping Oakley maximize his potential. The smallest of daily tasks—like eating, dressing, or playing—become challenges for Oakley without proper care and support. But with the right therapies, Oakley will continue to break boundaries and live his life to the fullest.

We celebrate every milestone Oakley reaches, and we’re confident that with your help, he will continue to defy the odds.

Thank you for your support. Your generosity will help us give Oakley the best opportunities for a bright future. We’re incredibly grateful for every donation and for being part of Oakley’s journey.

With love,

Nick, Amy, and Oakley

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.