Meet Colby One of our Inspiring ROHHAD Warriors, this is his Rare Reality Written by his mum Janka - ROHHAD Association

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Meet Colby Luis Palomeque Marica 8 years old from Pennsylvania USA, one of our Inspiring ROHHAD Warriors. This is his blog written by his mum Janka.

“Colby was born on a rainy Friday morning. Since his before his other ROHHAD symptoms began Colby has suffered from profound sweating, GI issues, recurrent fevers, hormonal inbalances, unexplained weight gain, snoring and choking while sleeping since he was born.

Even though Colby had difficulty eating, he would become very swollen sometimes severely and suffered from excruciating pain, and he was also very very active, it seemed almost impossible for him to just sit and be still for even a minute. Colby then kept gaining a lot of weight, which made no sense to me as he was so active and did not eat too much.

I was to learn a lot later that when Colby was about 9 months old his doctors already thought of ROHHAD SYNDROME, but it was a bit unusual to have symptomps since birth. I have also since realised that there is really Nothing USUAL about this horrible illness!

So I just tried to figure out what was making Colby sick and would ask the doctors to look at his symptoms together and him as one rather than each symptom separately. He hold see a lot of different doctors for each symptom he had. This changed when Colby was about 2.2 years old and we went to a diffrent hospital to see an Infectious Disease doctor, by that time the weight gain seemed unstoppable. Colby also suffered from inability to regulate his own body temperature, inability to feel thirst, high BP, high heart beat, high or low ability to feel pain and more, after hearing about Colby and listening to me about all of his symptoms, not only related to his speciality, he said he would do some research.

This doctor went to a conference a few years back and heard of one really rare orphan disease, he then contacted Colby’s main doctor and that was the very first time they had and I had heard of ROHHAD SYNDROME.

Colby was diagnosed on April 24th 2015.

It is very hard to watch your child suffer and not been able to help and as Colby is fighting more and more to just keep walking he never gives up!

Colby loves sports, any sport really, he is a huge fan of Lionel Messi and he dreams of becoming a proffesional football player and play for FC Barcelona one day. He loves to run and giggle, but his body just does not have the strength to let Colby play for too long.

Colby receives tons of therapies to make him feel better and to keep him moving. He does Art therapy, Animal and horse therapies help with behaviour issues related to ROHHAD and anxiety – which is sadly related to being bullied and made fun of due to his weight and this is so upsetting to see him go through as the bullying has given him unnecessery stress and has even made his condition worse as his symptoms worsen when under stress, his body cannot produce the stress hormone very well.

Colby goes each year to Florida to spend a week with dolphins and get some warm fresh air that is so important for his lungs as he suffers from hypoventilation, lung disease and asthma.

Colby went to Hawaii for his Make-A-Wish trip as he wished to see the volcanoes!

We will keep fighting ROHHAD! But we need help to do so and my wish is that one day we find a cure to stop all the children with rohhad from suffering and stop anymore children from gaining their angel wings. Please help the children if you can.
Janka mum to brave rohhad warrior ”
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AUTHOR

Lisa Hunter

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