Tyrone Six-year-old on transplant list for new lungs

“Jenni can’t do the normal things that other can children do – she can’t run, play or swim. We try our best to make her feel normal, even though nothing about her situation is normal.”

These are the words of Samantha Wilson whose six-year-old daughter, Jenni, suffers from a serious heart and and lung condition called Pulmonary Hypertension.

Samantha describes Jenni’s illness as a ‘cruel condition’ which causes high blood pressure in the blood vessels that supply the lungs.

It’s also a progressive condition, which means that Jenni, a pupil at Gibson PS, will decline as time goes on, and her only remaining option is a lung transplant – if she survives that long.

Jenni’s mum, Samantha outlines her story.

“Our wee daughter has a very serious heart and lung condition,” began Samantha, “and, as a family, we are faced with very uncertain times.

“Jenni is currently under the expert care of Great Ormond Street Hospital for Children and Royal Belfast Hospital for Sick Children, and at a lung transplant appointment on March 1, the team told us that Jenni was going to deteriorate, advising us to make a plan for when that does inevitably happen.”

Samantha and her husband Stephen were faced with ‘an extremely bleak outlook’.

“We were told that the treatment simply slows down the progression of the condition, and a lung transplant is the only option,” Samantha continued.

“The doctors told us that Jenni is the sickest child on the transplant list in Northern Ireland, and the only child with this condition on the list at present.”

Jenni’s quality of life has been severely diminished by the condition, and she requires very specific and complex treatment.

“Jenni is hooked up to a Hickman line which, if it were to malfunction, would be life-threatening,” said Samatha.

“She must also wear a backpack to hold the pump and have oxygen tanks beside her at all times.

“Jenni only gets to attend school for three hours a day, and has only completed eight months of school in total… as she is most often too unwell to attend, and is always in and out of hospital.”

Jenni’s continuous 24 hour medical infusion through the Hickman line means Samantha and Stephen have to monitor their beloved daughter at night.

“She has to sleep in our bedroom because of the Hickman line, and she’s currently sleeping in a toddler bed as our room isn’t large enough to accommodate another bed,” Samantha explained.

This issue, amongst endless others, was a driving force behind the family’s application for a Disability Facilities grant, which would mean Jenni could have a downstairs bedroom to fully accommodate her complex needs.

Jenni was then assessed, and it was confirmed that her condition had progressed enough to warrant the grant, however, she was awarded £52,000 but the family needs nearly £70,000 to attain the special bedroom.

Assisted by Gibson PS, the family have launched a fundraising drive to generate the £17,000 shortfall.

“We didn’t want to have to ask for help – we didn’t want to beg – but we had to put those feelings aside because this is for our child,” said Samantha.

“Without this bedroom, things are going to become very difficult for both Jenni and our family.

“This room is crucial; otherwise it will mean hospital admission for Jenni.”

Gibson Primary School has been instrumental in setting up a JustGiving page to help the family secure the £17,000.

“The JustGiving page was launched at a breakfast morning at the school on Friday, March 31 and we can’t thank the school enough for all their help,” said Samantha.

“Keith Sterritt, the principal, has been amazing and has done everything he can,” she added.

Jenni’s strength of character is something which hasn’t faltered throughout her illness, with her mum describing her daughter as ‘a positive and inspiring young girl’.

“Although she’s in a really difficult scenario, Jenni has been such a brave and determined little girl.

“We are so proud of how far she has come this past while and how strong she has been.

“All we can do now is keep hoping and praying that Jenni can get the help she needs,” concludes Samantha.

If you would like to donate to the JustGiving page you can do so by visiting Gibson PS on Facebook.

Alternatively, you can use Jenni’s JustGiving link: ‘www.justgiving.com/crowdfunding/gibson-pta’.