Help Send Nate To NAPA

By Samantha Shaffer

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Welcome to Nate's fundraising campaign, a campaign set up to help fund intensive therapy for our son Nate.

Nate is a sweet 2 year old little boy from Perth Australia, who was born with Trisomy 18 (also known as Edwards Syndrome). Trisomy 18 is a rare genetic disorder which results with a person having three copies of the 18th chromosome instead of the normal two copies. This disorder is a random fluke of nature, the outcome of an error in cell division at conception that was not caused by, nor a result of, a specific event or reason.

This extra third chromosome affects Nate physically, intellectually and developmentally. The physical issues that Nate faces includes cardiac abnormalities, orthopaedic abnormalities, growth delays, weak immunity, swallowing and feeding issues, as well as hypotonia, meaning he has very low tone which makes it difficult for him to use his body and muscles to do things that we all take for granted, such as sitting, standing and walking. Nate's Trisomy 18 also results with intellectual disabilities and global developmental delays. Despite being 2 years old he is still the size of a small 1 year old and has only reached milestones of a typical 6 month old; he can roll, he can also sit independently albeit for only short periods of time, he can hold himself in a crawling position if placed in it, but he is still unable to crawl independently, unable to transition from different positions such as from laying to sitting, nor can he stand or walk, which are all skills that a typical 2 year old would easily accomplish. He has swallowing difficulties and is unable to feed effectively by mouth, so he is fed via a nasogastric tube, a tube that runs into his nose, down his oesophagus and into his tummy. He communicates with smiles and frowns, he babbles with oohs and aahs, and has just started to say "mamama", but he hasn't yet developed the skills to vocalise any actual words.

Trisomy 18 is also known to cause cell abnormalities which can result in cancer. When Nate was 9 months old he was diagnosed with a Stage 1 Wilms Tumor, a cancerous growth to his kidney. Thankfully it was identified in its early stages so he underwent surgery to remove the tumor as well as his left kidney, and avoided chemotherapy treatment. He remains under oncology care and undergoes strict regular surveillance to ensure the cancer doesn't return.

Despite the many challenges he faces Nate remains a smiley happy little boy who has shown to have great strength and determination to overcome many challenges and achieve great things. As his parents, our main goal is to ensure that Nate has every opportunity to reach his full potential and live a loved, happy and comfortable life. He currently has access to some support services and therapies provided by government resources, such as physiotherapy, occupational therapy and speech/ feeding therapy. But unfortunately these resources are limiting, and due to Nate's significant delays he requires more therapy than the government system can provide. Access to consistent and regular therapy is key to Nate's growth in development and reaching milestones. He shows so much promise to be able to achieve great things with his development if he is given ample opportunity to learn through therapy. After much investigation and research in hope of finding ways to further help our Nate, we have learnt that children with significant delays like Nate benefit greatly from an "intensive" model of therapy. An intensive therapy program provides several hours of therapy each day for several weeks at a time, sort of like a "boot camp" of therapy. This differs to conventional therapy programs which provide short 45 minute therapy sessions once a week or once a fortnight. And attending one to two intensive programs a year leads to best results. Our research has lead us to NAPA, the Neurological and Physical Abilitiation Centre.

The NAPA Centre, initially set up in California USA, now has a permanent clinic in Sydney Australia. The NAPA Centre is world-renowned in providing paediatric intensive therapy programs individualised to children, like Nate, who have a variety of complex neurological and developmental needs. These personalised programs include physiotherapy, occupational therapy and speech therapy specific to the child's needs to help them maximise their full developmental potential. And the proven outcomes are phenomenal! Initially we were sceptical about the outcomes of NAPA, but we have since come to know children who have attended NAPA and have witnessed firsthand their progress, and NAPA's website also highlights the great things it's achieving with children like Nate

Unfortunately these intensive programs are not included in the government system. We have supplemented Nate's government-funded therapy with our own funds by paying for additional therapy sessions and support services, but as you can imagine, an intensive program comes at a great expense; the 3-week 45 hour intensive NAPA program that has been designed specifically for Nate is almost $10,000, and as the clinic is in Sydney there are then travel and accommodation expenses on top of that. As much as we want to send Nate to NAPA sadly we cannot meet this expense on our own, and it hurts us knowing that he shows such promise to achieve but we are financially unable to help him. Therefore we are reaching out to you all, to Nate's supporters and cheer squad, asking if you would like to help us in a way of a donation. No matter the size of the donation, it all counts and will contribute to Nate's intensive therapy programs at the Sydney NAPA clinic in March and October 2018. So if you would love to help send Nate to NAPA, give Nate the opportunity to receive life-changing therapy, help Nate continue to achieve great things, help our super star shine even brighter, then please donate to this cause. And we would also love it if you could spread the word by sharing Nate's fundraising campaign! Again thank you all for your support, words alone cannot express our heartfelt gratitude, we feel immensely blessed and fortunate that Nate has so many people cheering for him from the sidelines. Many thanks, Samantha and Leon xxx

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Samantha Shaffer