Help Theo live his best life with SMA 1

Aim of fundraiser:

Hi, we created this page (Shane and Stephanie parents) initially to help raise funds for Theo’s future, ensuring he has everything he needs to thrive as we didn't know what the path ahead looked like for him. Luckily Theo is doing brilliantly since receiving gene therapy in December 2021. As we look ahead, our goal is to provide him with the best possible care and support, while also enabling him to access critical medical, physio, and occupational therapy appointments.

We have some exciting news that we have bought a Trexo robotic walker but we still have a long way to go to fully pay for it as they offer a payment plan. This incredible device offers children with mobility challenges the ability to walk and experience greater independence. The Trexo will assist Theo by improving his strength, endurance, and overall movement, providing a transformative impact on his quality of life.

We didn't want to waste time and wanted to get it for him as soon as possible. Luckily Trexo robotics offer financing and so we will have it in September 2024 to get him started on his walking journey. Money raise will go directly to paying off the unit.

With your generous support, we can secure the Trexo and ensure Theo has access to the treatments and therapies that will give him the best opportunities for growth and development. Your contributions will go directly toward these essential resources, helping us give Theo the brightest possible future.

Theo's Story:

Theo was born on April 29th, 2021, and on August 19th, 2021, our world was changed when he was diagnosed with SMA Type 1 (spinal muscular atrophy). This is a severe genetic condition that affects infants, often limiting their movement, and making it difficult for them to breathe, eat, and swallow. Without intervention, children with SMA Type 1 struggle to sit up unassisted and face serious challenges in their development.

Thankfully, recent advances in medicine have brought new hope to families like ours. These breakthrough therapies target the root cause of SMA, offering children like Theo a chance for a better quality of life. On December 8th, 2021, Theo received Zolgensma, a cutting-edge gene therapy that gives him the opportunity to fight this disease. We are incredibly grateful that this treatment became available just in time for Theo in Ireland.

While this therapy is a major step forward, Theo’s journey is far from over. He still requires extensive care, including regular medical appointments, physiotherapy, and specialised equipment to help him reach his full potential. That’s why we are sharing his story and asking for your support. Any donation, no matter how small, will go directly toward ensuring Theo receives the best care, therapy, and equipment, like the Trexo robotic walker, to help him live life to the fullest.

Theo's day to day needs:

Theo requires specialised care at home. His daily routine includes using a BiPAP machine during naps and at night to support his breathing. He also receives enteral feeding, and we monitor him closely to ensure his comfort and health.

His care involves:

As Theo continues to grow stronger, his therapy needs will increase, but we are committed to giving him the best support possible.

Theo's future needs:

Looking ahead, Theo will continue to need:

Thanks for your help, love and support.

 

Shane, Stephanie and Theo :)