My name is Karen.Â My daughter Amelia participated as a RARE Community Partner as part of the Providence Half Marathon/Marathon weekend.Â Her running partner is Phil.
Amelia has a rare medical diagnosis called Congenital Hyperinsulinism (HI); only 1 in 50,000 children are born with HI. People with HI have a pancreas that over-produces insulin, causing hypoglycemia. We usually tell people that HI can be thought of as the opposite of diabetes. If HI were left untreated, it would cause extreme and dangerous hypoglycemia, leading to brain damage, organ failure and even death. Early diagnosis is the key to avoiding these side effects and allowing these kids to grow up to lead normal lives. Some children with a focal form of the disease are candidates for a pancreatectomy, where the area of the pancreas affected is removed. This does however have the potential to render the child an insulin dependent diabetic for life. Other children are managed on medication. These kids need careful monitoring of blood sugar levels to ensure their safety. Some kids with extreme cases of HI are unable to maintain adequate blood sugar levels with food and medication alone and require a feeding tube and pump to ensure they are getting adequate nutrition continuously throughout the day and night.
We recently returned from a wonderful weekend in Providence and we wanted to share some of our experiences as part of the Running4Rare team.
Amelia and I had a conversation about our trip which is captured below:
Mom:Â Amelia, what do you want everyone to know about our trip to Providence?
Amelia:Â We had to bring a lot of snacks for Providence and it as a very very long drive, so long the tablet fell asleep and then I got to use my imagination and play a pretend game on the tablet. I got to go to sleep in the hotel, go to museums and the Lego store in the big mall. That was fun, I got Lego people.
Mom:Â What else was fun?
Amelia:Â It was fun to meet Phil Paul (don’t tell him I call him that, he’s the third Paul. The other two are Daddy Paul and Frank Paul, brother).Â Â And his daughter Abby was nice. Getting to eat dinner with his family was fun. I had ravioli and Phil did too. I had bread and got to play on your phone. Phil got to run because he had pasta. Getting to see Phil run was fun. It was cold. He ran with lots of other people. Phil didn’t win but he tried his best and that’s what’s important. He got a medal for running and he gave it to me. It’s hanging on my wall. I don’t want to give it back. He shared it with me. I don’t have to give it back, do I?
Mom:Â Phil said you could keep it. And I asked why did Phil run?
Amelia:Â He ran for rare diseases.
Mom:Â What are rare diseases?
Amelia:Â What you and me have, Aunt Laura and Grandpa have it too. And all the people at the conference (referring to The Congenital Hyperinsulinism Family Conference in Philadelphia, April 15-17, 2016 which we attended). We need to eat carbs and protein.
Mom:Â Is there anything you want people to know?
Amelia:Â Running is fun. You can run inside and outside. Phil only runs outside. He can run outside when it’s raining. Why can’t Phil run inside? I like to run inside when it’s yucky out, there’s enough room to run inside.
Mom:Â Anything else you want people to know about running?
Amelia:Â If you run around and around back and forth and high five people it’s called a marathon. And we are gonna see Phil run again. Â Can we talk to Phil on the computer this SaturdayÂ because that’s what we do on Saturdays.
Mom:Â Â I will check with friend Phil and see if he is available to be on the computer sometime probablyÂ SaturdayÂ afternoon after t-ball.
Amelia:Â Donâ€™t call Phil that.
Amelia:Â Phil is not our friend he’s our family now.Â Can we play “marathon” outside?
Mom:Â How do we play that game?
Amelia:Â We run around back and forth in the backyard and we high five as we run.
Mom: Â Can you draw a picture of Phil;
Amelia:Â Philâ€™s hand is stretched out for a high five. Â These pictures are my favorite from the weekend.
Amelia has talked so much about Providence this week with her teachers and classmates, family and friends.Â She has talked about Phil and his family and whole team made a big impression. She even told our town librarian about Phil.
My husband Paul and I agree that we’ve seen, in the past month, Amelia run more than she ever has – seriously more than she ever has in her entire life combined. We give Phil and this team credit for that. For us Amelia running around has been a huge worry since we’ve seen her sugar drop whenever she would swim or do gymnastics. We would always keep food close by when any physical activity might take place. And we never did tell her that she could not run we just never offered up the idea that she could. Ever since “meeting” Phil, Amelia has been asking to go outside so she can run and when we are out any playground or park she runs far and fast. At t-ball she runs with the boys out past both foul poles and back.Â Let me tell you my heart nearly stopped when I saw her take off running for the first time and it took every ounce of self-control not to run right after her and tell her to stop. Once she got back home I tested her sugar and it was at okay levels. The only explanation for it is the adrenaline that was in her system kept her from dropping too far.
Participating as RARE Community partner has impacted Amelia and my family. Amelia got a dose of self-confidence that came with feeling â€œnormalâ€ as she interacted with the entire Running for Rare team.Â Amelia has begun to trust others more and feel more open about sharing her diagnosis as she talked about the marathon and Phil.Â As a mother I feel a renewed empowerment to keep up the fight against Amelia’s life-threatening medical conditions.
I â¤ï¸ this!!!! I am so happy you had this wonderful experience. You are both great ambassadors for CHI. We look forward to seeing you again soon.
We loved hearing Amelia’s thoughts about your trip and meeting Phil. You are great ambassadors for CHI and your essay is very moving. You are an amazing mom and a wonderful example of being an advocate for your child. We are so proud of you both. Thank you Phil and the RARE Community for bringing these rare diseases into the public consciousness. Meeting you and your family will be something Amelia remembers all her life.
I think Amelia should design our next team artwork. She captured the spirit of the team so perfectly with Phil’s high-fiving portrait! I loved reading your impressions of the weekend.