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Parents of a Stamford toddler with life-changing genetic disorder FOP launch campaign to research new treatment



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The family of a two-year-old boy born with a rare genetic disorder are campaigning for research into new treatment for the disease.

Lenny Blaik from Stamford was diagnosed with fibrodysplasia ossificans progressiva (FOP) this summer, and is one of only 90 known cases in the world.

FOP causes human connective tissue, such as ligament, cartilage and tendons, to turn into bone.

Lenny is one of just 90 known patients in the world with the rare genetic disorder, fibrodysplasia ossificans progressiva (FOP)
Lenny is one of just 90 known patients in the world with the rare genetic disorder, fibrodysplasia ossificans progressiva (FOP)

Innocuous bumps and falls, part of everyday life for toddlers, can have big consequences for two-year-old Lenny, causing his muscles to swell, while broken bones lead to permanent damage.

"If Lenny breaks a bone he will never be able to use that part of his body again," said mum Stacey.

"A new bone grows and he will end up with a double skeleton.

Lenny (left) with sister Lacey-Ann (8) and little brother Lyle (10 months)
Lenny (left) with sister Lacey-Ann (8) and little brother Lyle (10 months)

"He can't move his neck from side to side or up and down or use one of his arms, and could end up in a wheelchair if he damages his legs at any point.

"We're just taking things one day at a time."

Lenny was born with bumps on his toes which were originally thought to be bunions.

A series of fundraising events are planned to support research into the rare condition
A series of fundraising events are planned to support research into the rare condition

But three months ago he returned to hospital after lumps appeared on his back, neck and shoulders.

At first thought to be lymph nodes, further examination of X-rays and ultrasound scans at Great Ormond Street Children's Hospital confirmed FOP.

"It was a huge shock, we were heartbroken" said Stacey.

"He is such a happy little boy, always so smiley, and very active."

As well as regular hospital visits to Peterborough, Lenny also sees a FOP specialist every two to four months.

Yet with no cure or treatment available, the family are joining a campaign to increase research into the rare condition, to give hope of a better future for their son.

They are urging people to sign an online petition, launched by the FOP Friends charity, to ask the Government to support research.

It has already attracted the 100,000 signatures needed for the matter to be raised in Parliament.

"When he has a flare-up it is really painful for him," Stacey added.

"He's given pain relief and a three-day course of steroids to get the swelling down because that's the only treatment available at the moment."

They are also organising fundraising events to support Lenny and FOP Friends, including a Three Peaks Challenge and a co-ordinated event next February.

A Stamford Halloween Trail also began on Monday (October 18) which continues until October 31 in aid of FOP Friends. A map is available from the Stamford Corn Exchange and entry is £2.

A crowdfunding page has also been set up for Lenny to help buy a specially-adapted double pushchair, an adult changing mat, sensory equipment and soft play items.

The campaigning also helps gives them a focus and distraction as they continue to come to terms with a life-changing time for their son and the whole family.

"We have good support from the family and the professional involvement has been really, really good," Stacey explained.

"We are doing a lot of fundraising to put some money towards care and treatment for Lenny.

"We are just trying to keep busy. Sometimes you just push it to the back of your mind."

The family are working with South Kesteven District Council to find a new home, adapted to help Lenny live a life that is not just safe, but also fulfilling.

"The worst part is he can't do normal boys' stuff he used to do," said Stacey.

"Lenny really loved doing the Baby Shark dance, but can't do that now because he can't raise his arms.

"He is currently off nursery until they have got funding for a one-to-one care plan, and he can't do trampolining which he loved.

"He has also been diagnosed with autism and the trampoline was his place to let off a bit of steam.

"Sometimes you just want to forget about it all because you don't want to stop him from having those experiences of life while he has the chance."



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