A Tale of Two Sisters (Part 2)

My name is Hope and I’m 8 ½ years old. My sister has had nosebleeds ever since I can remember. Sometimes she has a nosebleed in the middle of playing. Blood can drip on our Legos and we have to stop. I feel really sad when Lily’s having her nosebleeds because I really like playing with her, but her nosebleeds only stop our games for a bit. Sometimes we are able to carry on because a nosebleed doesn’t have to stop us all the time. During sleepovers Lily has to take a towel because she might get blood on the pillow. I’d feel uncomfortable because it wouldn’t be nice to sleep on, but Lily just gets used to it.

Lily gets nosebleeds because she’s got Hereditary Hemorrhagic Telangiectasia which is really hard to say so we call it HHT. HHT is something that makes lots of little veins pop in her nose, cheek or hands. The other thing that can happen is that her veins take shortcuts, the actual name for this is AVMs. We don’t know when she gets AVMs. They just appear and can cause blockages.

Lily was born with HHT, but we didn’t find out until this year. We found out because she had so many nosebleeds and then she had to go for an operation and lots of tests. The results came back and showed she had HHT. Because Lily has HHT, it is in her genes which are the instructions of your body. They tell your body what to do. There’s a 50% chance her children will get HHT and her children’s children. It could go on for many generations without a cure.

At the start, I’d go to the appointment if it wasn’t during school time. I’d find out what the different tests were and how you do this and that. But since COVID-19 I can no longer go. I feel devastated I can’t go to the appointments because I want to find out more about HHT. My mission is to find a cure for HHT. After the appointments I ask Lily to tell me all about it because I want to know what’s going to happen to her but also so I can learn to be a doctor.

I sometimes feel I’m missing out because if Lily has a big nosebleed my Mum and Dad have to go and sort it out and I don’t know what to do. After one of Lily’s operations, she had to have a nasal wash. She was upset and started to cry because she didn’t want to have it. I didn’t want her to be sad, so I got her juice and biscuits to help her calm down. That’s my job now when she has a bad nosebleed. It’s the way I can help. Sometimes I feel a bit lonely because my Mum and Dad are giving Lily a cuddle and I’m alone, but I like it when they come and give me cuddles too.

When Lily is having an operation, I don’t like waiting because I don’t how Lily is doing. I don’t know if the operation has finished or if she will come home for the night. Mummy rings to let us know what’s happening and when it’s over I ring Lily at the hospital– sometimes I even get a treat too! Lily bought me a sparkly cushion that I cuddle when she’s in the hospital.

I’m writing this because people might not know how I feel or why I might be upset. Having a sister with HHT is interesting because you get to find out lots about the body, but it is hard because I can’t help too much for now. The good news is that the doctors CAN help her. When I’m a doctor, I’ll be able other people with HHT just like Lily. My message to people who have a sibling with HHT is don’t be afraid, talk about how you feel.