UPDATED 1/24/2019 Please read ....
DeLainee is Now 11 When I made this page she was only 7 years old. At age 4 DeLainee was diagnosed with a very serious and very rare heart condition called Catecholaminergic polymorphic ventricular tachycardia or CPVT ! Most people don’t survive their initial Sudden Cardiac Arrest but she’s a miracle!
CPVT causes an irregularly fast heart rate resulting in cardiac arrest and death. She has an implanted pacemaker / defribulator in her abdomen with the leads running outside her rib age which makes it impossible for her to participate in any sports and most recreational activities.
A few weeks ago the device shocked her and doctors found a different part of her heart in addition to the CPVT is now causing SVT's. At age 9 she received her second pacemaker which again required two surgeries to place the leads correctly. August 2018 she went back to surger for a broken lead replacement where they also assessed the hole in her heart and decided not to close it at this time.
DeLainee just wants to do and be like other typical children....her sister participates in competitive cheerleading and DeLainee is so sad not to join the team.
We are trying to raise money for several reasons, not only medical bills, expenses to help with respite care during hospital stays for her brother with Autism, but also to help pay for fabric and stuffing DeLainee uses to make pillows that she donates to pediatric cardiology wings at children’s hospitals all over the country. We would love to raise enough money for her to travel to one children’s hospital in every state and deliver 30 pillows to each! .
Her last hospital stay was over 30 days and it took us years to pay for. She is now scheduled to undergo an additional procedure.
Our 20 year old son has severe Autism, he has seizures and also requires constant supervision.
Currently (since March 2018 - present) DeLainee has been suffering from debilitating Bone pIn and fever. The flair ups come every 10 days to 2 weeks and she generally misses 2 days of school because she’s unable to walk. This too has caused her to far extremely behind in school. She has been seeing a rheumatologist along with working with doctors from National Institute of Health and has had several genetic tests done all of which give no diagnosis...only a variant in one of her T cell genes NFAT5. She is constantly battle new unexplained symptoms the latest is a strange pink dry sporadic rash on her body.
It's hard for us to ask for help but we are finding it harder to do all of it on our own, and do not want our other children to feel the burden by missing out on their needs.
Please do not feel pressure...just know that every thought and prayer is also appreciated.
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