Family hope to raise 160k for groundbreaking stem cell treatment for daughter, Ivy, who suffers from cerebral palsy – Scottish Daily Record

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Sep 04 2017

Little Ivy Rose has a smile that lights up a room but unless her parents raise enough money for groundbreaking treatment she will have to use a wheelchair for the rest of her life.

The three-year-old faces a life of isolation because her cerebral palsy means she can do very little for herself. But she is a delightfully engaging child who shows courage beyond her years.

Stephen and Sky Summers, from Shotts, Lanarkshire, were devastated when their little girl was born prematurely with medical difficulties.

Ivy was born just a year after the couples twins, Xander and Sandy died after being born too prematurely.

Sky, 36, said: They died in my arms. One was just under an hour, the other just over an hour.

When Ivy also arrived early her parents feared she would die too.

Now they are determined to do everything within their power to ensure she gets the very best chance to live as normal a life as possible.

Sky said: When Ivy arrived, she was whisked off to ICU. I didnt even get to touch her. We didnt think there were going to be big problems at first. She came out crying and gurgling.

Initially, Ivy was tube fed and it was three weeks before she could have milk from a bottle. Her problems didnt become completely apparent until Ivy came home at five weeks.

Sky said: We brought Ivy home and within the first 24-48 hours, she had what we call her first episode.

She stopped breathing. She was sleeping in the carrycot next to our bed. I fed her, put her into carrycot, turned round and heard a commotion.

Her arms were shaking and she was very distressed. She couldnt breathe. I picked her up put her across my knee, patting her back but I couldnt get her to start breathing. She started turning blue.

It was a terrifying moment. I started to very gently breathe into her mouth and she came round and started breathing again.

That was the beginning of many episodes over the next eight months. It was a very traumatic time where we just tried to keep her alive.

It transpired the tot had acid reflux and the pain and shock of the acid was enough to stop her breathing.

As she grew, her condition improved but Ivy has never been able to eat anything other than mushy food because of her cerebral palsy.

She is a happy, bright little girl but her mum is not prepared to accept there is no hope of any improvement.

Sky said: Ivy sees NHS specialists but they are only interested in managing her condition, not in curing or rehabilitating it.

When the cerebral palsy diagnosis came through around her second birthday, Sky said: I felt hopeless.

I remember very specifically being told the likely scenario was Ivy would never be able to walk unaided but she would maybe be able to manage around the house, holding on to furniture. She would most likely be in a wheelchair. The best hope is for Ivy to start any therapies as soon as possible because once she is seven her ability to be improve her mobility will diminish.

A connection through family led to meeting Dr Joanne Kurtzberg, who is awaiting approval from the US Food and Drug Administration for stem cell treatment with donor cells on cerebral palsy patients. Kurtzberg has agreed to accept Ivy on to the trial if she meets the criteria.

Ivy also has the opportunity to have treatment from specialists RehabMart including sensory therapies involving work with horses, special suits and trapezes among others.

While some of the therapies will be free, many others are expensive.

The family will have to live in the US for six months to give Ivy her best chance of improvement but it will cost 162,000 which they are hoping to crowdfund.

Sky said: It is a once-in-a-lifetime opportunity for Ivy. I am so blessed she is so happy, so affectionate, intelligent and funny but she is excluded from everywhere in life.

Exclusion is a horrendous part for a child with cerebral palsy.

Cerebral palsy is the name for a group of lifelong conditions which affect movement and co-ordination, caused by a problem with the brain which occurs before, during or soon after birth.

The symptoms arent usually obvious just after a baby is born. They become noticeable during the first two or three years. It affects each person differently but the condition may limit a childs activities and independence.

The problem with the brain doesnt worsen but the condition can put a lot of strain on the body.

To donate, go to: http://www.justgiving.com/crowdfunding/ivyrosesummers .

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Family hope to raise 160k for groundbreaking stem cell treatment for daughter, Ivy, who suffers from cerebral palsy - Scottish Daily Record

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