Our Angel Archer - I'm running so that he will too

Our Angel Archer
4 years ago, following 10 months of concerns around Archer’s ability to feed, lack of muscle tone and not meeting expected milestones, the world was pulled from under our feet. In the midst of COVID lockdowns when we were most isolated from the world, we were told that our beautiful child would not catch up with other children, that he would experience the world very differently from ourselves and that we would be thrown into a world that we never believed would exist for us. It was hard to grasp how significantly our lives had changed overnight, because it’s one of those things that you don’t ever think will happen to you, until they do.
It was during this appointment that we learnt about ‘Angelman syndrome’, a rare genetic condition where the maternal side of the 15th Chromosome is deleted, which affects 1 in 15’000 – 20’000 live births a year. It is a lifelong condition that is currently incurable and is managed through therapies and sometimes medication for symptom management. Due to the Angelman syndrome, Archer functions on very little sleep (sometimes as little as 2-3 hours a night), struggles with motor and movement issues which limit his ability to walk, he is non-verbal, has a severe learning disability and has a diagnosis of epilepsy. He does have a wonderful care team around his which includes (but is not a complete list), a physio , an occupational therapist, speech and language therapist, a neurologist, an epilepsy consultant and a paediatrician – but as these are NHS funded, they are limited to the time, support and equipment that they are able to offer.
Writing it down in words however doesn’t always frame just how tough life is for Archer. He is still a child and like any children he has his own wants and needs, and he is growing increasingly frustrated with his inability to communicate these to those around him, and to independently navigate the world. He watches as his brother and other children his age run around and play and will become upset if he can’t join them. Despite this, Archer is one of the happiest, most excitable children you will ever meet. He's like sunshine in a human body, and everyone that gets to know him tells me how privileged they feel when Archer finally embraces them as one of his people. He works so hard every day to try and find ways to move around and communicate his needs, and I want to help make that journey easier.
While at the start of journey I felt like I was drowning, Archer’s determination, courage, resilience, and undiluted joy have inspired me to challenge myself, and to discard all my own limitations. Archer battles every single day to take a few steps, or to shuffle across the room, and if he must face that, why shouldn’t I too? For that reason, I have signed up for the London Marathon in April 2025, and have amazingly received a place through the ballot. I’m not a runner, and training will be horrendous, but it will be a drop in the water compared to the challenges that Archer faces every day. I want to use this opportunity to raise funds to help us provide Archer with the specialised care and therapies that he needs to thrive and flourish. Our goal in the first instance is to provide Archer with a private physiotherapist to enhance the work done by the NHS, to hopefully get him up and running so much sooner. I am running, so that he can one day run too.
Your donation will make a world of difference in Archer's life, helping him continue to be the wonderful, brave, and determined child that he is. Please join us in supporting Archer on his journey towards a brighter future filled with hope and possibilities. Thank you for being a part of our journey.
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 Archer'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 Archer in accordance with Tree of Hope’s charitable objects, then any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope. If you have any questions at all please do not hesitate to call the family support team on 01892 535525.#OurAngelArcher