Myles Hughes is just one of around 120 children in the world with a life-threatening condition so rare that doctors can't predict what the future holds for him. Mum Georgia Hughes has one hope for him, that he will make it to his teenage years.
Georgia was thrilled when Myles was born in 2019, and at first she didn't think much about doctor's concerns over issues that were picked up in a routine examination, wanting to focus on her "new little bundle of joy". However things started to change quickly, and Myles ended up needing an operation.
The first thing doctors flagged up was that Myles had a "clunky hip" and his feet were turned upwards. The nurses also said he had what they thought was glue ear.
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Georgia was told she'd be sent follow up appointments but was able to take Myles home. The Holywell mum, said: “I didn’t think much about it all at the time because I just wanted to focus on my new little bundle of joy. He was like a tiny sparrow with his little hands and legs."
In the months that followed, Myles was diagnosed with severe hearing loss and fitted with tiny hearing aids. He also had an operation on his hip. “During that time I was terrified because of how quickly things were changing. I was taking Myles from one appointment to another and I didn’t have the chance to process what was going on,”
“He needed another major operation on his hip at two years old. We stayed in hospital for a week then he came home in a cast. I hired a special table so that he could sit upright and play, but I had to move his position all the time to keep him comfortable.”
Georgia started doing her own research into Myles' symptoms and became convinced that he was showing signs of a condition called 4H Leukodystrophy. The condition is incredibly rare, so much so, that Georgia had to fly to Amsterdam with Myles for a consultation with a leading child neurologist who is an expert in the condition.
“The doctor confirmed Myles had a severe form and did lots of neurological testing. There are only about 120 children worldwide with the condition and every child is so different so you don’t really know what the future holds.”
According to the Children's Hospital of Philadelphia, 4H leukodystrophy is a rare genetic disorder that affects the nervous system. It is a group of conditions that damage the myelin sheath, which surrounds and protects the nerve cells in the brain and spinal cord and speeds transmission of messages between cells. People with 4H leukodystrophy often have motor problems, including stiffness of the muscles and joints and problems with balance and coordination. They may also have movement disorders, including tremor or difficulty controlling smooth movements of their arms and legs. As infants, they may have delay in teething or have teeth appear in an unusual order. They are usually small for their age, and they do not go through typical puberty.
The condition is having an effect on Myles' development, mobility, hearing and also his teeth. There is no known cure for the condition but treatment is available to manage symptoms and improve a child's quality of life. Georgia said: “So many children with this condition die between the ages of eight and ten years old. More than anything I would love to see him become a teenager. That would be my dream.”
Georgia, who cares for Myles alone, has been receiving help from Hope House after being recommended by a paediatrician. You can support Myle's appeal here.
“When they said it was a children’s hospice I just didn’t know what to expect. I thought it would be a place that children went to die but it is so much more than that. We have had mainly respite care from Hope House but I’ve also used the counselling service as well.
“The first time we came we thought it was so amazing. It was friendly, open and welcoming and Myles loved the hydrotherapy pool and the Supernova sensory room. He really likes the swinging hammock and sliding down the foam steps instead of crawling up them! He is a little daredevil and very fast at army crawling on his elbows!
“The counselling has been really good in helping me come to terms with Myles’ diagnosis and helping me to feel that I’m not alone. It’s a relief to have professionals to talk to who really understand. I’ve also met other parents through Hope House and it has been a massive help hearing about their children and their experiences. I guess it makes me feel less isolated.
“Myles has been in mainstream school since the age of two and I’ve felt sad seeing children running out to their parents and telling them how their day was because I’m never going to get that with Myles. So to meet families and other children like us has just been a massive help because that is our world.
“When we aren’t at Hope House I care for Myles on my own, so it was very strange handing over his care to nurses and at first I would follow them around. But with very small steps I’ve been able to leave him in their expert care and just meet him for meals. It did feel strange at first but every time I saw him he was smiling and having the best time.
“For the future, I just hope that Myles gets to be a teenager. I just want his happiness to continue and his health too because generally, despite everything he has going on, he is quite healthy.
“Hope House is a massive breath of fresh air for us both – it’s a place and people we can rely on. Julie (Hope House’s Clinical Nurse Specialist) has been important too because she attends all our meetings with other health professionals and can arrange things like Myles staying at Hope House after future operations so I wouldn’t have to nurse him at home on my own which would be terrifying.
“I feel there is always someone that I can always rely on in a crisis or an emergency. I know I won’t have to go through anything on my own because I can call Hope House and they are always there to help. It’s just an amazing place that I never thought I would need, but I am so grateful that it is there.”
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