Hey all. Thankyou for taking the time to check out our fundraiser, we are fundraising for our Daughter Brinley, and her medical expenses. she is 17 months old and was diagnosed with a rare and complex genetic disorder called Prader-Willi syndrome at 2 weeks old. After a difficult pregnancy with abnormal blood flow through to the placenta, I got induced at 37 weeks and met our gorgeous second daughter. When she was born, the doctors came to us with concerns in her abnormally low muscle tone and floppiness, she fell asleep minutes after Birth and didn’t wake up like a typical newborn would, she didn’t feed, she didn’t cry and she hardly moved, an NG tube was placed so she was able to be fed, and on a low flow of oxygen as her oxygen levels kept dropping, they decided to give her a few days to “perk up” but once they noticed she had ‘no reflexes’ in her legs and arms, they began running tests. an MRI on her brain was done, heart scans, full body scans, and many genetic blood tests were run. We were sent home on a feeding tube, an oxygen tank, and no answers. Until we got a phone call “I’m so sorry. you’re Daughter has a rare genetic disorder, Prader-Willi syndrome” it is any parents worst nightmare receiving such a life altering diagnosis for their child. We began our research “Leading cause of childhood obesity, failure to thrive, short life expectancy, cognitive disabilities, Low IQ, Autism like disorder” Were all things we read. We quickly realised that what the internet had to say about our baby was not going to define her or stop us from fighting for her and the things that she needs. She is our world and we will continue to fight every single one of her battles. PWS is a chromosomal disorder that affects the 15th chromosome and occurs completely randomly. as a baby, Brinley struggled with hypotonia (low muscle tone), slow weight gain, weak sucking reflex, sleepiness, oxygen desats, temperature regulation and more. There is a phase in her life that if not managed properly, she will deal with something called hyperphagia (an inability to feel full) her brain and stomach will not speak to each other, her brain will always be tricking her into thinking she’s always hungry Children with Prader-Willi syndrome can benefit from a variety of therapies and treatments to improve their symptoms and help them thrive in the best possible way. They often need strict dietary supervision, physical therapy, speech language therapy, occupational therapy, treatments with growth hormone injections, and more. At less than 3 months old Brinley was lucky enough to get started on Growth hormone therapy, which gave her the kickstart she needed. Growth hormone therapy is extremely important for individuals with Prader-willi, it improves muscle tone, increases healthy growth, improves body composition and decreases body fat, it can also help with higher IQ. We have just moved from NewZealand to Australia QLD because of the help and support available in Australia rather than NZ. In NZ, we were unable to get quality ongoing help with all important therapy’s like physio and speech language therapy, so we made a huge decision to leave our country to follow the better help and support for our girl. we are aware that we are not yet citizens in Australia, so therapies or medical appointments cannot be covered by NDIS yet, we are also needing some very important appointments in the next couple of months that we will have to pay out of pocket for, (there are long public system wait times, and we can’t afford to waste time) we need a private endocrinologist and another possible sleep study in order for us to be able to get her Growth hormone injections and thyroid medication prescribed here, as well as the therapy’s she desperately needs. We are financially unable to pay for these things at this stage and any little amount donated would be hugely appreciated and would go straight towards her appointments. If you’re unable to financially help us, we would also appreciate your prayers that Brinley will be able to get the help and support she needs, no matter what. Thankyou all so much Tyla, Cade, Brinley and Heidi xx
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