Devastated by the news of a poor prognosis for a rare genetic condition known as Hunters Syndrome, the family of a young Bradford boy are reaching out to raise awareness of MPS, as symptoms can often remain undetected.
During Covid, the family of the then two-year-old Mikaeel Khan picked up on the signs that something was not quite right when he began suffering from severe constipation along with a multitude of complex issues.
The hospital sent him home with laxatives and failed to identify that he had a swollen abdomen, was moderately deaf and had slow development, as he was not speaking at the age of two.
His family have spoken out about how Covid delayed an early diagnosis for the young Mikaeel, which would have made the difference between life and early death.
Hunter syndrome is a very rare, inherited genetic disorder caused by a missing or malfunctioning enzyme and affects one in 100,000 to one in 170,000 primarily males.
Hunter Syndrome affects only sixty children in the entire UK that have the most severe form, Mikaeel being one of them and the only child in Bradford that has it to date, with two children in the surrounding areas of Yorkshire, one child in Huddersfield and York according to the Khan family.
Caused by genetic self-mutation where the parents may be carriers of one faulty gene that has come from the chromosome, that is inherited by the child, the missing enzyme prevents the sugar molecules from breaking down in the body, which builds up and causes all types of physical and cognitive defects.
Although new treatments can help with managing symptoms and complications, there is no cure for Hunter Syndrome, which is the most severe out of the group of disorders which fall under MPS.
Asian Standard spoke to the family of Mikaeel:
“It’s been really hard emotionally and physically keeping up with his needs as well as my other children. Watching him struggle on a daily basis is awful and I feel so helpless in the situation.
“We’re trying to do our best on making every moment count and take every day as it comes,” says Sabah, the mother of Mikaeel.
The progressively degenerative disease comes with a reduced life expectancy, as Mikaeel’s paternal grandmother Amina Khan comments “It was the worst thing we could have imagined that his prognosis wasn’t good, it’s usually from the age of ten if we are lucky up to twenty because it’s a downward spiral from the age of five”.
The disease takes over the body and brain leading to loss of mobility, skills, walking, talking and swallowing.
Amina adds “Mikaeel slipped through the net that’s what’s so upsetting, had it been picked up at the age of two, he could have had the enzyme replacement therapy, which is a bone marrow transplant, his prognosis would not have been poor, and he would have had a good quality of life”.
Mikaeel is one of three children that is going for the new enzyme treatment in Manchester, which is due to start shortly but has not yet been given a start date.
The treatment has been successful so far and is currently being trialled in California, however, comes with the risk of side effects, which the family have said they are prepared for.
“We had to go for it, because of the condition that he is in and because we are really comfortable in the knowledge that he is under the best care that he could possibly be under in Manchester,” says grandmother Amina.
The standard enzyme treatment hopes to help his body function a little better and give him a better quality of life, but the new enzyme treatment will cross his blood-brain barrier, which intends to stop his brain from declining rapidly.
Joining her grandson on their trips to Manchester Children’s Hospital for assessment before he begins his treatment, Amina says “To him, pain is just the norm, he thinks it’s normal to have pain, he just lives with it and soldiers on, he is just a remarkable little child, and he never ceases to put a smile on my face.
“It’s when I look at Mikaeel, I think I’m not going to give up on him, I’ll go to any lengths to support him, and all my spare time is devoted to him”
The cost-of-living crisis has affected the family financially, as they are raising funds for a mobility vehicle, which will provide physical support for Mikaeel and be big enough to accommodate his car seat and other siblings, so they can go out together.
The family faces further predicaments, as they have reached out to local MPs and Councillors in the Toller ward for help on their housing situation.
A rented property that requires adaptations to accommodate Mikaeels’s needs is being put up for sale by their landlord, which could effectively leave the family homeless unless the council come up with alternative housing to accommodate their needs.
After putting in a request to meet with senior council officers in housing, Cllr Kamran Hussain awaits a date in order to find a solution for Mikaeel.
Cllr Hussain of the Toller ward told Asian Standard “I have only recently been made aware of this case, but I have requested for a meeting with the housing options services manager, at the earliest opportunity, to discuss this very serious and complex case to re-house Mikaeel.
“I will be working very closely with the family and continue to support them through this very tough and difficult period”.
The family has so far raised £2,343 of the £10,000 in funds, which will go to a number of things to help accommodate Mikaeel’s needs.
His mother Sabah concludes “I’m incredibly grateful for the love and support we’ve received through the go fund me and Mikaeels Instagram page. It’s been so lovely to read everyone’s well wishes and know that people out there support us in this journey we’re on.”.
You can support the family by raising funds on their page https://gofund.me/efab67bf
