On December 16, 2011, Oliver James Kennedy was born to proud parents Jen Kennedy and Mike Higginson. Weighing in at over 10lbs, he was promptly nicknamed "Moose". Mr. O and his mom have been inseparable ever since. He has been a dear, sweet, quiet lad from the beginning. Oliver is blessed with a large and loving family here in Alberta, as well as in Saskatchewan and BC.
August 7, 2014, we received news no family should ever hear. Our Oliver was diagnosed with a rare genetic neurodegenerative disorder called Metachromatic Leukodystrophy (Late Infantile onset) or MLD for short. Without going into extensive "medical-speak", this disorder means that Oliver will progressively lose all mental and physical abilities and will be taken from us within a few brutally short years.
There is no cure and no treatment for MLD. Caring for a child with MLD is a matter of treating symptoms as they arise and otherwise ensuring comfort and stimulation for as long as possible. There is no way of determining the speed at which regression occurs, although our doctors have told us he will likely experience complete regression in all areas by next summer. 6 months ago, Oliver ran about like a typical 2 year old boy. Today he is unable to even simply sit without complex support. Most children with MLD pass away by the time they are 5.
We desperately want Oliver to enjoy as many of the joys and wonders in our world while he is still able to. We want him to giggle at Disneyland, and gasp as the cold ocean washes over his feet. We want him to sit in a firetruck, and to see geysers erupt, and to watch the northern lights, and to see dolphins up close. Oliver loves Cars, especially Lightning McQueen, and airplanes of every shape and size. He loves Kinder eggs, his cousins, his iPad, and his special friend, Sarah the Dog. We want Oliver to be able to visit with his family in other places as often as possible. We want him to take a train ride through the mountains and maybe a cruise to watch iceburgs crash into the sea.
Oliver will need medical support for the rest of his life. We are so fortunate to live in a province and country that will provide for so many basic medical needs, including adaptive equipment. However, even that pot is limited. There are many items available that would assist in ensuring that Oliver is as comfortable and safe as possible. These types of items carry their own version of sticker shock.
It is very difficult to make a decision to ask other people for money. But after much thought and discussion, as well as strong encouragement from friends and family, we have decided to humbly ask friends and family for funds that will enable us to fulfill Oliver's bucket list, as well as to ensure that we can do everything possible to provide him with the equipment and supports he needs.
We recognize that not everyone is able to contribute financially. Like most people, we live paycheck to paycheck, and finding extra can be hard. Prayers, love, friendship, support, and helping us to share Oliver's story are even more important to us than any dollar amount could ever be. But for those of you who have expressed a desire to assist financially, we have created this fundraiser as a safe and convenient way to do so. We promise to use any funds raised in a responsible manner to benefit Oliver for the rest of his life. After some of the struggles we have already experienced, if there is money left over, we will donate it to an organization that assists in providing pediatric adaptive equipment on a short term basis while waiting for funded equipment.
From all of us, on behalf of Oliver, we offer our deepest and humblest thanks.