Ashton's Story
He smiles through his chronic pain and loves to make people laugh
He is at his happiest when he is swimming, sketching and making people laugh. Seven-year-old Ashton smiles through his Marfan-induced chronic pain and loves life, but the world is sometimes too busy to reciprocate. He won our hearts, and the front cover slot for our new Guide to the Marfan Trust Charity. Meet Ashton.
by Lizzie, Ashton's Mother
"When Ashton was a baby his grandmother, who was a nurse at the hospital, noticed that his fingers were really long and thin. I didn’t think too much about it but allowed her to take Ashton to a doctor who she worked with to get his opinion. The doctor wanted Ashton to have genetic testing and that seemed to take forever. We waited around 6 months for the results and I still will never forget that day! The doctor in the room told me that he had a marker on his gene that was consistent with Marfan and that the ECG on his heart had shown dilation of his aorta. I remember sitting there thinking that it couldn’t be serious as I’ve never heard of this condition before. But I was wrong, because our lives have completely changed and are dictated by hospital appointments, pain levels and fatigue. I fight the motherly instinct of wanting to wrap Ashton in cotton wool and instead I fight for the world to adapt to include children like Ashton and to learn about connective tissue disorders! The doctors sent his brother, sister and me for genetic testing, but this came back negative and it was concluded that Ashton has a spontaneous mutation.
Ashton takes daily heart medication and receives scans every 6 months to check his aorta and the regurgitation of his mitral valve. It doesn’t matter how relaxed a doctor looks when they tell you that the regurgitation is ’trivial’ because as a mother it still hurts to hear and fills me up with fear of the inevitable surgery I know is to come. He wears splints as he has severe hypermobility as a result of his Marfan; and at times of higher fatigue, or if we are walking for more than 10 minutes, he will have to use his wheelchair. He has myopia which has worsened rather quickly and at the age of 7 he wears glasses with a prescription of -9.50. He is also undergoing a diagnosis for Autism. He is such a sweet and kind little boy, he is achieving Greater Depth in everything at primary school, but gets marked down for writing as his disability is a barrier to his letter formation and how long he can write for. His hands hurt so much from writing but he tries his best because he wants to make his teachers happy and show them that he can do it. He also receives physiotherapy (separate to the post-surgery physio) and occupational therapy.
Ashton loves swimming and is his happiest when he is in the water! He loves listening to his older brother play piano and his long fingers are proving a great asset with him learning how to play himself too! Ashton loves sketching and shading and is fascinated by nature. He loves watching the wind blow the trees and loves playing in his sandpit with his little sister, who is actually 10 years old but Ashton is already over a head taller than her. But one of the most amazing things about Ashton is that he loves to make other people laugh. He is so funny and tells amazing jokes that he researches on his iPad. And it is like when he sees that he has made someone else laugh, that his own eyes light up and he looks like he is shining from inside. What a big heart!
But one of the most heart-breaking things is that he braves all these medical challenges and smiles through his chronic pain, only to be completely isolated from children that he longs so much to play with because he simply cannot keep up physically with other 7-year -old children. I have been fighting his school for the right level of provision for almost 3 years now and have made significant progress. Though sadly it took Ashton to sustain a severe injury on the school playground in order for his condition and needs to be taken seriously. It seems that people, like I was myself when Ashton was diagnosed, simply don’t understand how hard it is for a child with Marfan to grow up in this busy world and that seems to come from the simple fact that people just don’t know what it feels like for a person who has Marfan. Ashton has a mountain to climb before even being ready to do a task that others would take for granted. "
We are terribly proud to feature Ashton as the face of our charity.
Download our new Guide to the Marfan Trust today!
General Guide to the Marfan Trust Charity
