She is a very brave autistic seven year old girl who can no longer can do all the fun activities a normal seven year old can do. The disease rids her of her breath and ability to play for extended periods of times. It will only worsen as time passes.
Pulmonary hypertension is a clinical syndrome where the blood flow that leaves the right side of the heart faces an increased resistance (pressure).
In pulmonary hypertension, the blood vessels of the lungs have an increased amount of muscle in the walls. This causes a higher resistance in the lungs. The right ventricle then has to work harder to pump blood out to the lungs. The right ventricle will enlarge and thicken in response to this extra work. With time, the extra work placed on the right side of the heart can cause it to fail.
Unfortunately, there is no cure for pulmonary hypertension. There are now many treatments that have been found to relieve some of the symptoms and slow the progression of disease but these are all adult medications. Due to it being very rare in children there is still no medicine being produced specifically for children.
After her cardiac catherization it was determined her pressure reading was at 73 (20 is normal). They did find that Sildenafil worked during the cath and her recent reading via an Echo was 51.
Sildenafil is a medicine made for adults and because of this the costs are higher and the long term effects are really unknown.
We are praying that with continued use of the medicine that she will eventually get to a number that will increase the potential for her to avoid a heart/lung transplant.
She has been an inspiration to everyone around her and with this recent diagnosis we've worked tirelessly to try and create a sense of normalcy for her. Despite the many difficulties life has thrown at her, she faces each challenge head on with unbreakable determination. To that end we want to provide her with all the tools to help her defeat this.
Unfortunately the cost of those tools, the medication and hospital bills, is becoming more and more difficult to keep up with even with the great insurance my work provides. To that end I have set up this GoFundMe to help her in her battle to defeat this rare disease.
Anything helps, even if it is just enough to cover the cost of ONE dose of medication.
Thanks to any and all that are able to help Raine in her fight.
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