On November 25, 2017 we welcomed our son Emmet into the world. It was a complicated pregnancy and birth by emergency C section. At birth Emmet was genetically tested for Marfan Syndrome. He was thought to have this because his mom (Amy) has this also. When Emmet was born he had an echo which confirmed he has an enlarged aorta, a bicuspid valve, and a hole between the right and left atrium. Although all of this was going on, it was seemingly mild.
Emmet was diagnosed officially when he was a month old.
By two months old he was admitted to our local hospital and found to have a Diaphagmatic hernia. There were two large holes and his stomach had gone up into his chest and twisted. This was crushing his heart and lungs. He lost a lot of weight and could no longer safely take feeds. He taken by ambulance to Sick Kids in Toronto where they did surgery to repair this. His stomach is now held in place by a Gtube on his abdomen. Emmet spent the following three weeks in hospital recovering.
Recently Emmet returned to Sick Kids where he had another echo. This echo showed that his heart had gotten much worse in a very short amount of time. He is now on heart medication to slow the growth and prolong needing surgery for as long as possible. He will need an artifical valve placed. Since he is so small there, if it is done now he will need it replaced again as he grows.
This week Emmet was rushed back to the hospital after having respitory issues and cynotic episodes. He is now admitted again to Sick Kids hospital under going many tests so they can try and figure out the issues causing this.
Although we are receiving some great care, there are a lot of unanswered questions. Because Emmets case is so severe and his medical history is so extensive at only 3 months old he needs to see a specialist in Marfan. We do not have access to this here.
We have found out we are eligible for a Scholarship for the Marfan Foundation Conference this July. We will be able to receive a medical assessment and further testing from some of the very best doctors. The scholarship will cover some of the costs (one registration fee, hotel for 2 days). We are trying to raise the rest of the funds to be able to attend as a family. This will hopefully provide resources that will help us get the answers we are seeking. We will also be able to meet families going through similar situations.
We thank you from the bottom of our hearts for taking the time to read, sharing our story, and for any donations we receive toward the cost of this experience for our family.
I will be posting photos as well as updates of our journey here.
- Dan Kerr
- Chris & Paul Patterson
- Morgan Dorion
- Leanne Mountjoy
- Scott McNeil
Organizer and beneficiary
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