The following blog post was written by Sarah and Cole Sullivan about their children Colbie and Cayle. This story makes my heart melt! Both Colbie and Cayle were diagnosed with HCU after Colbie suffered a massive blood clot on her brain. I'm honored to share their story and dedicate part of my 2019 Miami Half Marathon to this amazing sibling team!
In June of 2012 shortly after Colbie’s 3rd birthday she suffered a massive blot clot on her brain. She was flown from Montana to Seattle Children’s Hospital to get treatment for the blood clot. The doctors were confounded as to what may have caused the small strokes and blood clot. After a week’s stay and many tests they still didn’t have an idea. They had chalked up the cause as chance or a freak incident. They allowed us to return home with follow up appointments scheduled 6 weeks out.
It wasn’t until a month later, July 2012, when we were on the follow up visit that the doctors tested her blood for homocystine. Her levels were abnormally high and it alerted the doctors to what the cause of the blood clot may have been - her levels were so high that Colbie’s blood had become toxic and prone to clot. The next day we got to sit down as a family and learn about Homocystinuria or HCU – a metabolic disorder so rare that we had never heard of it. We had an hour crash course on the metabolic disorder - we learned that our daughter didn’t develop this disorder but was born with, natural protein in food is essentially poison to our daughter, and that she would have to go the rest of her life on a high amount of medication, lab formulated protein, and a strict vegan diet. It was a lot to absorb, Colbie’s world was turned upside down – she had practically lived on dairy products up until then.
We also learned that HCU was hereditary and we should have our son tested for the disorder as well. Being that we are from the state of Montana, which doesn’t require a second blood screening two weeks after birth, we had Colbie’s brother Cayle tested for HCU – it came back positive. We took the diagnosis of our son pretty hard – such a rare disorder and we have two kids with HCU. The following weeks were filled with the thoughts and stresses of how the kids’ lives will be affected since our society and social events in America are based so strongly around food.
It is the simple things in life that many people take for granted that remain at the forefront of our thoughts every day. If one of their friends has a birthday party we must supply a specially made treat. If the neighborhood ice cream truck comes through we must explain that they cannot have a treat from the truck but that they can have a different treat. If we attend a movie at the theater we must smuggle in diet friendly snacks. The overwhelming stress and anxiety of the holidays can only be understood by a small amount of the population.
Fast forward to 2019:
Fast forward to 2019:
April of this year will be 7 years since Colbie received her diagnosis of HCU and we are getting along well. Although HCU is a major part of our lives, we take it in stride with everything we do – whether that is planning for a trip, heading to town for the day, or simply going to a social function.
Currently, the kids are enjoying school. Not only do they
enjoy learning while at school but they are both very sociable kids. They look
forward to their library day every week and each kid has a favorite subject –
Cobie’s is Animal Science and Cayle’s is Math. We have been very fortunate that
our local elementary school is very accommodating with our kids’ HCU. As well
as, each teacher that we have had along the way has gone out of their way to
cooperate with us throughout the year in planning for birthday parties and in
classroom snacks.
Cayle (Age 7)
Colbie and Cayle are very active kids, both of them are in a
sport/activity pretty much throughout the entire year. Colbie trained for and
completed her first 5k run this past fall while Cayle played basketball. This
winter will find them both on the ski hill enjoying any fresh snow that falls.
Spring will bring about softball & baseball. Summer leads to swimming,
biking, and some golf. Colbie also takes horseback riding lessons throughout
the year.
Colbie (Age 9)
Currently, they do very well with their daily formula &
medicine regimen. They are HCU diet compliant and we have had good success in
keeping their blood levels below 100. One big milestone for the kids this past
year was meeting other children that have been diagnosed at the HCU Network
American Conference that was held in Boston.
If you'd like to make a donation to HCU Network America in honor of Colbie and Cayle, or another HCU Hero, please stop by my fundraising page for the 2019 Miami Half Marathon:
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