Having grown up with pulmonary hypertension, 21-year-old Kaylee Mynot knows a thing or two about life with a rare disease. In her latest blog for the PHA UK, she shares the difference her family has made to her journey with PH.  

“As most of us know, PH can be difficult to live with at times. However, having a understanding and supportive family behind me has made it so much easier to cope with.

Since I have had PH from the age of one, my family have never really known any different and they have been amazing since I was baby. Even though my parents aren’t together anymore, my mum and dad are still always working together on everything that concerns me and my siblings. I spend a lot of time with my family as we are all really close.

So let me introduce you to my family!

First, we have my mum, Kay. Some of you reading this may have met her or know of her. I’ve also written about my mum in previous articles! My mum is my best friend, I truly wouldn’t be here if it wasn’t for her. She is always making sure I get the most out of life, and we spend pretty much every day with each other.

Next is my dad, Scott. He really is my hero. I have always been a daddy’s girl, and my nan is always saying how alike we are! My dad works full time, but I still see him every Wednesday and we also get to spend the weekend together.

There is so much I could write about when it comes to my dad. He never ever fails to make me smile. Ever since I was little, we have had our little sayings and traditions that are special to us, and most of these really helped when it came to hospital appointments and operations as a child. They are just little things that I’ll remember forever and hope to pass down if I ever have children.

I know when he reads this my dad will know exactly what I’m talking about and that is what makes it so special. My dad is just the perfect example of the saying ‘not all heroes wear capes’. I feel very grateful to have someone so special by my side. He really means the world to me.

Then we have my brother Max and sister Cassie! We adore each other and I honestly think life would be so boring without them. They really do make me laugh until I cry. When we’re together there is never dull moment between us. They are the type of people that always have you doing the massive belly laughs. They do of course get on my nerves sometimes, but that’s siblings for you!

Next up is Nanny Star and Pops. These two people I will truly treasure forever. Most of my childhood memories consist of baking with my nan and Pops always coming in and moaning about the mess we made. But I know he secretly loved watching us have fun, and he always got a cake out of it! I spent a lot of time with them when I was going through a really hard time with school and life in general, and I wouldn’t have got through it without them. I have so much love for them.

Then there’s Nanny Pam, and where do I even start with her? I could honestly do the worst thing in the world and she would still think I was the best granddaughter. She’s the nan that worries for everyone; if it was her way I’d be covered in bubble wrap and bundled in a blanket all the time. My nan’s house is my safe space, and there’s nowhere I’d rather be if I’ve had a tough day or I’m feeling down.

Lastly there’s my nephew Jayden and niece Lucy – my two little busy bees who always keep everyone on their toes! I adore being their auntie and they always makes me so proud. I always look forward to them telling me all the new things they’ve learned at school.

Our favourite thing to do together is the river walk that leads to the park. I’m definitely always exhausted after spending the day with them, but I wouldn’t have it any other way!

That’s almost everyone! We have such a big family I’d be here forever writing about them all, but these are just the special few that really do make living with PH bearable. I couldn’t do it without them.

Family really is so important to me, and I feel very grateful that I get to make memories that will last forever with the people I love.”