Poppy Urgently Needs Her Intestines and Stomach Replaced

5 yr old Poppy Hughes

5 yr old Poppy Hughes-Wilson and Mum

What an incredible story of a 5 year old girl who got to come home from the hospital for Christmas. How difficult EDS can be to even the youngest of our community!

 

By Alex Ross                                                                    Published on Friday 21 December 2012 09:22        The Gazette

“A BATTLING youngster is hoping to spend Christmas at home this year despite needing a lifesaving transplant.

Brave Poppy Hughes-Wilson, five, suffers from the extremely rare Ehler Danlos Syndrome and urgently needs her intestines and stomach replaced.

After being born with the degenerative condition, Poppy has never tasted food in her short life and is resigned to getting the fuel she needs through an intravenous drip.

She will attend a two-week hospital assessment in January to determine if her body can withstand the rigours of the transplant.

Her mum Kim Hughes-Wilson, 30, said: “I’m really worried because we are reaching a point where we don’t know what will happen if the operation doesn’t go ahead.

“If she can’t get a transplant there’s nothing else we can do, we just have to carry on as normal but I don’t know how long she will survive for.

“It’s really hard and I feel like I should be able to do something.

“All I’m doing at the moment is being her nurse and trying to carry on and I feel like the decision about what to do is all on me.”

If the transplant goes ahead, there is no guarantee it will work and Miss Hughes-Wilson, of Durham Avenue, Cleveleys, says her daughter will still have to endure more suffering to get better.

She added: “The risks are high and getting through the first year is very difficult with the type of transplant she needs.

“It would improve her quality of life from what it is now but it’s also hard work and I know she will have to go through more suffering to get to a point where she is healthy.

“It’s hard and frightening and I just feel sorry for her more than anything because we are trying our hardest to make her comfortable, but there’s only so much we can do.”

Poppy has spent three out of the last four Christmas holidays on a children’s ward, but is set to be at home with her mum and sister this year.

Miss Hughes-Wilson added: “It’s a very stressful time.

“All of her fluids are fed through her blood stream which in itself has massive risks because of her weak immune system because she can get really bad sepsis.

“We are all hoping she stays well enough so we can keep her at home and our aim is to not have another Christmas in hospital this year.

“She was still very unwell last year but we managed to get out in the middle of the night to come home and get back in time for Christmas.”

A challanging time for the family, friends and doctors to deal with this difficult situation.  We wish them all God’s speed and blessings.

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