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FAIR FOR RARE: GRACE'S STORY

I'm submitting this story for my daughter Grace who is 9-years-old. Grace was diagnosed in October 2017 with idiopathic pulmonary hypertension (IPH). Before the diagnosis, she was having fainting episodes and getting breathless very quickly. We managed to get an appointment with her cardiologist as Grace had a heart condition at birth that was fixed with surgery.


The diagnosis of IPH blew us away - we were told it is a life limiting non-curable disease. As the doctors had never had any experience with a child who has IPH, they can’t tell us how long she has. Best case scenario is likely to see Grace living until her late teens but she can go into right ventricle heart failure before then as both her lung and heart pressures are very severe.


Grace is on a number of medications to try to slow the disease's progress but there is no cure. IPH is normally an adult disease - 1 in every million children is diagnosed and there are only 8 people in the clinic we attend, each whose age varies.


When needed, Grace has oxygen at the moment. She will eventually require the oxygen full-time. After the oral meds stop helping her, she will progress to being treated intravenously, through a 24-hour pic line that will see Grace only having a 5 minute window to seek medical help if something happens to either the line or pump. This is the last level of medication available before the only other options: a heart and lung transplant.


Grace can’t join in any sports and gets very tired very easily. It makes her sad to miss out on normal activities with friends - it’s hard on her and I struggle to remain positive at times for her. She also misses lots of school through hospital stays, clinic visits and just being unwell. Thank-you for letting us share.