Bradford family raise funds for little Mikaeel born with MPS

Despite appearing perfectly healthy at birth, little Mikaeel began experiencing unexplained health struggles at the age of two.

What started out as seemingly normal constipation developed into fatigue, breathing difficulties and issues eating or sleeping.

Meanwhile, Mikaeel’s abdomen became incredibly swollen and there were physical differences in his appearance and the way he walked.

The Khan family, who live in the BD9 area, began searching for answers but he needed specialist help.

It was a doctor at St Luke’s Hospital who diagnosed Mikaeel with a genetic disease known as Hunters Syndrome, or MPS type ll.

Mikaeel, described by his grandma as a little soldier, pictured in hospital. Picture: Amina Khan

The incurable condition means Mikaeel is missing an important enzyme which breaks down chains of sugar molecules used to build connective tissues in the body.

“His prognosis is, if he’s lucky, anything from the age of 10 to 20,” his grandma Amina Khan said.

“He’s a little character despite his pain. He just thinks it’s normal to him, he carries on.

“He’s got the most wonderful personality, a little comedian.”

The family’s ‘little soldier’ is set to receive a new type of enzyme treatment trialled in California.

Led by specialists at Manchester Children’s Hospital, teams in Bradford will be providing daily enzyme treatments for Mikaeel throughout the rest of his life.

If it works, it could alleviate Mikaeel’s painful symptoms - but it carries a risk of sepsis.

“He never ceases to keep going,” Amina said.

“He is a fighter, he’s strong. He can defy odds. He will because we’ve got that much love and support for him.

“It took us a long time to get a diagnosis.

“Watching him daily, I see the change. It’s seeing that change in his physique. His bones are really thin, his abdomen is really swollen.

“We have to keep a positive frame of mind, we never give up on him.

Amina Khan and her grandson Mikaeel, pictured. Picture: T&A

“We have to keep stability and keep his parents going.

“It’s something that we have to live with but I’ll go to any length to try and give him love and comfort.”

It is that same love that has inspired a fundraising campaign for her son and daughter-in-law.

The Go Fund Me page will allow the couple to place a deposit on a specially adapted car and improve his quality of life.

Having a car designed for his ailments would allow Mikaeel and his three siblings to make more memories together.

The family would also use it for visits to Martin House Children’s Hospice, which will soon offer respite for Mikaeel.

Any extra funds will go towards care equipment costs, fuel for hospital trips to Manchester and utility bill payments.

Mikaeel requires several showers a day due to his health issues, but the rising cost of living and ongoing housing issues have impacted the family’s finances.

People across Yorkshire have raised almost £2,000 for the cause so far.

Reacting to the thousand pound figure, Amina said: “We’re just so grateful, so emotional.

“Words just fail me of how grateful we are.

“I was embarrassed to ask for financial help.

“If he gets that support in place he’ll have more quality of life.”

In his short life so far, Mikaeel has experienced his own graduation ceremony at nursery and become the face of a popular Instagram account documenting his journey.

Mikaeel graduates from Champion Childminder. Picture: Amina Khan

His mum, Sabah, started her page @mikaeelsjourney to raise more awareness about Hunters Syndrome, and connect with families in a similar position.

She told followers: “Our lives changed as we knew it, navigating our way through this devastating condition, all whilst trying to maintain normality for him and his three siblings.

“The disease takes over the body and brain leading to loss of mobility, skills, walking, talking and swallowing. He will become entirely dependent on me until his body can no longer cope. Mikaeel is not expected to live past his teens.

“The main aim is to treat symptoms as they come, when safe to do so and only if it will help quality of life.”

• Anyone who wishes to donate to the Go Fund Me page should visit https://bit.ly/3BGi9fF