Our son, Henry Louis Geddy Kantor, will be struggling for the rest of his life. Thank you so much for the thunderous early support in reaching our immediate goal.  The more we've come to learn the more we realize he will need.   We recently learned that Henry has a rare genetic mutation in his SMAD4 gene, which has been identified as Myhre Syndrome .  This is an extremely rare syndrome with about &lt;200 cases worldwide (1 in 38 million people).  Those with Myhre Syndrome seem to have similar traits with both common physical and mental challenges, and it's clear to us now, that these traits are present and obvious in Henry. As Henry's parents, we don't really know what is in store for him.  We do know the statistics are not on our side in terms of what symptoms will develop over time.  We will work to be proactive in his care.  As we know, human genetic mutations do not yield to hope or prayers - they are unforgiving and cannot be reasoned with.  As parents we are both troopers who work hard not to let anything get in our way or get us down.  This is a difficult challenge for which neither of us are prepared for ... and we will be figuring it out day-by-day.  We are already feeling the challenges of managing Henry on a daily basis. It requires lots of work and a good plan. <img src="https://d2g8igdw686xgo.cloudfront.net/56745683_1620602986523751_r.jpeg" alt="56745683_1620602986523751_r.jpeg" width="100%" media_type="3" /> How we learned about Myhre Syndrome When Henry was four months old, he was diagnosed with a heart murmur.  We then realized that he was not growing, and found out his blood pressure was different in each of his limbs. After consulting with the cardiology team at SickKids, we agreed Henry needed a reconstruction of his Aorta.   Henry's body was not one that reacts to surgery in a typical way, and we first found this out post-op when our surgeon explained to us that reconstructing Henry's heart tissue seemed to be a challenge from the standpoint of pliability ( something he had never seen in 15 years of his career).  The head of cardiology at the time also remarked that he thought he saw some subtle signs of difference with Henry, in  his physical features.   We were brought back full circle to these original observations, when the genetics team at SickKids reached out to us. They had done a number of tests, some general and some specific, and after weeks of this, had found an answer. <img src="https://d2g8igdw686xgo.cloudfront.net/56745683_1620603013164508_r.jpeg" alt="56745683_1620603013164508_r.jpeg" width="100%" media_type="3" /> What we do know: Myhre Syndrome is a connective tissue disorder. This impacts every system in his body. Henry has already endured 2 heart-related surgeries.  These surgeries have left him unable to swallow on his own.   Heart surgery is common for people with Myhre syndrome. Many Myhre Syndrome people have respiratory and breathing issues. Myhre Syndrome has already shown issues with his digestive tract. Henry already has issues sleeping through the night and this may be a long term problem, related to Autism Spectrum Disorder, which some Myhre Syndrome people have. He may also suffer learning disabilities.   Henry is already showing a potential for scoliosis and has physical and occupational therapy frequently to ensure he can develop regular motor skills and muscular development.  Some Myhre Syndrome people have vertebrae issues which vary widely. Henry will likely have vision and hearing challenges beginning in the next couple of years as this is common in most Myhre people. Henry will have difficulty with using his hands and holding objects as his hands will be small, and have stiff joints, and the skin will be thick, limiting his motion. Henry will also be very small in stature. Any future surgeries can cause massive trauma to his life due to how his body heals.  <img src="https://d2g8igdw686xgo.cloudfront.net/56745683_1620603045848225_r.jpeg" alt="56745683_1620603045848225_r.jpeg" width="100%" media_type="3" /> <img src="https://d2g8igdw686xgo.cloudfront.net/56745683_162060310241285_r.jpeg" alt="56745683_162060310241285_r.jpeg" width="100%" media_type="3" /> If you want to know more about this syndrome you can find most of the info here: <a href="https://rarediseases.org/rare-diseases/myhre-syndrome/" target="_blank" rel="noreferrer noopener">Myhre Syndrome</a>  We want to focus on giving Henry as normal a life as possible for as long as possible, and to love him completely.  A normal life for Henry is anything but certain, as his condition will be fighting us at every step.  We know that Ontario and private insurance already does not support his needs, as benefits have quickly expired and many of Henry’s needs won't be covered. There are a handful of experts in the field that understand this condition and none of them are in our country.   Many people have been so helpful and generous over the last several months with Henry and his Mom living in the hospital.  Thank you for your love and support as we go down this new road.  Love from,  Alana, Matt, Elias, Essa and Henry <img src="https://d2g8igdw686xgo.cloudfront.net/56745683_1620603349739267_r.jpeg" alt="56745683_1620603349739267_r.jpeg" width="100%" media_type="3" />

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Henry Kantor Medical Fund

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Henry Kantor Medical Fund

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