8 year old with Pulmonary Hypertension

ottawaclo · May 29, 2016

Evening,

Wasnt going to post here but figured what the hell.....maybe it will let someone out there that is also dealing with this know that they are not alone..and if I posted in the wrong spot or this is not allowed...apologies and promptly delete the post.

My 8 year old autistic daughter, Raine, was diagnosed with Primary Pulmonary Hypertension last June. Over the past year we have been visiting the Childrens Hospital in Peoria quite often and I cannot tell you how brave this little girl is. Below is the write up I posted on her gofundme page and if anyone has anyone in the family with PH...please reach out. My wife and I lean on others who are going thru this as a sense of strength.

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 45.

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.

Either way my family and I have been blessed with the support we have received over the past years..and to keep it relevant to these forums....i have been given golf clubs to sell and keep the funds....there is just too much to list when it comes to the support we have received for my daughter.

Thanks to any and all that are able to help Raine in her fight.

www.gofundme.com/raineolesen

ottawaclo · June 15, 2016

Just want to say thanks to most recent donations and those that reached out. Means alot.

Good luck on the courses!

ottawaclo · November 21, 2016

Just wanted to provide a quick few updates on Raine....

We literally just returned from a one week stay at the amazing Give Kids the World Village in Kissimmee Florida as part of the granting of Raine's Disney Make A Wish. If you do not want to donate to Raine's fund please send them some donations. Just an amazing place.

A huge thank you to the people of Make a Wish Illinois for setting the Wish up and Raine had an amazing time and as a family we have memories that will last a lifetime.

We head back to Peoria in January to test for cystic fibrosis. Raine is coming off an extended bout with pneumonia and her pulmonologist wants to see if she tests positive for CF as that could be the cause of her PH.

Thank you again to everyone that continues to lend support to Raine's PHight.