Rag doll

Little boy who was “almost like a rag doll” the only person in the world with a rare disease

George Reed steals the hearts of everyone he meets, but the smiling little boy is the only person in the world diagnosed with his rare genetic condition.

Her condition is so rare that even the best specialists don’t know what the future holds and her family needs help.

Is there wheelchair access? Where can we change it? Is there room for his equipment? Will I be able to feed him? Will he have a seizure? These are just a few of the questions mom Anita thinks about every time before she leaves home with George.

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But for the 50-year-old super mom, who works four days a week at a Bushey marketing company and helps run a support group, that’s to be expected.

“We didn’t have kids before the twins, so that’s okay,” she said.

“This is our life, we have to make the most of it.”

“He was really soft almost like a rag doll”

George, Ian, Anita and Edward Reed

A few months after giving birth, she and her husband Ian knew something was wrong.

Anita said: “Because he’s a twin, we noticed early on that he wasn’t developing the same way as his brother (Edward), so he was really limp almost like a rag doll and he didn’t. couldn’t hold his head up high until he was an Age.

“We thought maybe he was blind, you could literally shake a rattle in front of him and he would react like it wasn’t there.

“We went to four different doctors for a referral because we were told we were new parents, we just compare him to his brother and everyone is developing differently.”

Anita and Ian were determined not to give up, and around eight months of age, doctors discovered George’s chromosomal disorder.

He is the only person in the world to have been diagnosed with this disease.

George’s life can be pretty tough. He has a visual impairment, on bad days he can have up to 50 seizures and he has to wear clothes from the toddler section.

Doctors at Great Ormond Street Hospital did brain scans during George’s seizures, but they did a blank. Anita has been told that her condition is similar to epilepsy but other than the chromosomal disorder, there is no other diagnosis.

Twin brother Edward takes care of George
Twin brother Edward takes care of George

It’s unclear what George’s future will look like, but his family are determined to do their best.

Anita said: “George is completely non-verbal but Edward (his twin brother) always seems to get it, even when we don’t.

“He goes to the toy closet and he always chooses the right toy. George always loves him, there is never an argument, there is no competitiveness.

“George loves everything that’s really sensory, he loves messy play, he loves water, he loves his bath and he loves anything that turns.

“If you give him a toy, he’ll spin it, lights, and whatever else is touching.

“He’s the happiest boy you can meet. Even when his epilepsy is severe and he has fits every day, he still manages to smile – it’s pretty amazing.

“He affects everyone when they meet him, no one forgets George. In the respite centers, they all fight for him to take care of him.

“He’s so curious about the world, you have to be very careful, especially now that he’s walking.

“He’s really unstable on his feet, so we have to watch him constantly because we have different floor areas at home, he can trip over when moving from room to room.”

“George is a very special and unique boy in many ways”

Little George with his head bandaged
Little George with his head bandaged

As George gets older it becomes more and more difficult for Anita and Ian to help him move out and take care of him.

The Reeds hope to raise £ 75,000 to adapt their home in Harrow, including making the front of the house accessible so they don’t have to lift their heavy wheelchair over the doorstep.

They also want to make the downstairs accessible so George doesn’t have to spend all of his time in the same room.

The family also wants to install a bathroom with specialized equipment and create a space for a night help.

The fundraising got off to a flying start with J2, the Bushey and London-based design agency specializing in real estate, where Anita works as Creative Planning Director.

The two offices ran a virtual 200km cycle race on exercise bikes with each employee doing 15-minute stints and tracking each other’s progress on social media, raising over £ 30,000 from customers and supporters .

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Managing Director Julian West has pledged to match all funds raised up to the first sum of £ 3,000 – topped ten times in their first event.

She said: “George is a very special and unique boy in many ways and we all felt very strongly that we had to do something to help him, Anita and all her family.

“To have raised over £ 30,000 at our first event is amazing and I want to thank our friends, clients and partners for their incredibly generous support.

“However, it doesn’t end there for D2, we will do our best to hit the magic £ 75,000 with a series of other events in the months to come.”

To donate to George’s Fund, visit https://www.justgiving.com/fundraising/j2forgeorge

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