<div>Hello! We are so grateful you are here reading our story. This is our son Oliver, we sometimes call him Ollie. Oliver is a 9 yr old boy and the youngest in our family with an older sister, June who is 11. Oliver is a happy and active boy who loves to try almost anything. He is curious, creative, determined, super snuggly, loving, caring, resourceful, empathetic, sensitive, kind, social, hard-working, strong, thoughtful, and hilarious. His presence in our lives has been one of our greatest gifts. Not only does he possess all of these amazing qualities, but he is also our greatest teacher. Every day he asks us to show up fully and authentically. He is showing us what it means to slow down, to be present, and what it means to truly connect with and perceive someone in their true nature. We are learning what it means to be on a different path in life, to embrace the beauty of it and let go of societal conditioning and expectations. Our mindset and the lens through which we view the world has shifted tremendously and it is an honor and a privilege to be on this journey through life with him. Oliver has so much to share with the world and we can't wait to see how his unique gifts are expressed through him.
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<div>Born prematurely at 28 weeks and weighing just 3 lbs, Oliver had a lengthy stay in the NICU. He was later diagnosed with Cerebral Palsy when he was 18 months old. There are many different forms of Cerebral Palsy and it can look different for every individual. For Ollie, it mainly affects his legs. Currently, Oliver uses a walker and wears AFOs (braces) for mobility and safety at school and in public. Around the house, he can walk independently by cruising and hanging onto walls and furniture.
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<div>He always works hard and does his best in therapy sessions....even when he doesn't want to do it.
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<div>Over the past few years, Oliver has grown A LOT and is currently moving through a regression in his mobility, resorting to more hand-holding for walking and even crawling. The two main reasons for this are: First, growth spurts - while the bones are growing the muscles continue to contract and shorten which begins to cause bone contractures. Daily stretching is not enough. Second, while Oliver was growing and needed support over the past few years (2020 onwards, we all know what happened here) many of the therapy centers closed their doors. This has greatly affected him and his mobility. Before 2020, he was walking independently much more.
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<div>Our goal has always been to hold off on interventions as long as possible, however, as Oliver gets older we know that the physical changes can affect his self-confidence. We are always looking for ways to help him gain his strength, mobility, and independence back again.
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<div>Earlier this year we had an assessment for orthopedic surgery in Toronto. The surgery wait times are 12-18 months at least. Hundreds of children are on the waitlist. Also, the recommended intervention for Oliver is a very invasive surgery (think plates, screws, resetting bones) with a very long in-patient and potentially painful recovery.
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<div>Some of you reading this may remember when Oliver was 3 years old we took him to New Jersey to see a doctor for a procedure called SPML. This surgery is minimally invasive, with a short recovery time and has excellent physical and functional outcomes in children. It will give Oliver relief from discomfort and the mobility he dreams of. We've done it before and were very happy with the results, AND they had a surgery date for this summer (June 7th)!! Since Oliver is now 9yrs old, we discussed all of the options in detail with him and he has chosen SPML, on one condition.....that we also take him to New York City to see the Ghostbusters Firehouse!!!
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<div>Only two surgeons in North America perform this specialized orthopedic procedure called Selective Percutaneous Myofascial Lengthening (SPML). One of the surgeons, Dr. Nuzzo, is in New Jersey. SPML will provide relief to the spasticity in Oliver's legs. Relieving muscle pain and giving him the chance at more range of movement, and ultimately more independence. This procedure is not available in Canada and OHIP will not cover it. OHIP also will not cover the therapy that is required for an entire year post-surgery.
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<div>We strongly believe that this will be a game-changer for Ollie. We are by no means trying to "fix" him. He is perfect the way he is. What we are leaning into here is opening the door to possibilities. Opening the gates to Oliver's dreams (not ours) of running, kicking the ball, wearing the shoes that don't fit, riding a scooter, doing parkour, as well as having the strength and balance to not fall so often or have to crawl. Unlimited possibilities and potential!!
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<div>We are reaching out to our village for support. It is not easy to ask for help, so whether you can support us financially or even by sharing this or by sending your love and good vibes our way, we receive and honor it all with immense gratitude. Funds will be used to pay for the surgery and help support Oliver with the post-op therapy.
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<div>Thank you so much for taking the time to read our story.
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<div>With Gratitude, Love and Appreciation,
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<div>Angela, Pieter, June and Oliver
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Sylvia Keszthelyi

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Big Dreams and Possibilities for Oliver

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Big Dreams and Possibilities for Oliver

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