August 2019
Hiya peeps reading this! I am an ordinary boy with ordinary hobbies and ordinary likings and ordinary toys, buuuuuuuuuuuuttttttttt………… I have a condition called Diamond Blackfan Anaemia (DBA). I live a very happy life and it doesn’t affect me much. Or does it??
My name is Munkh and I’m 11. I have been coming to Evelina London nearly my whole life.
I was born very sick, and at first, I was under the care of Dr Baba Inusa. I needed many tests and FINALLY got my results. Diamond Blackfan Anaemia is a rare genetic condition and I was diagnosed at the age of 2 months. My haemoglobin, which is what carries oxygen in your blood, was SO low at one point, but I was lucky to get specialist treatment. It was a hard journey but I got through. I am now under the care of Dr Jay Alamelu.
I have blood transfusions every three weeks, but this means there’s a risk of iron build up. So I also have Desferal infusions to help reduce this. It involves needles and hurts but "needleless" to say, I’m okay with it, I think??
The staff make me feel so welcome and comfortable when I come. #SoFun
I have been to the head, eye, ear, bone etc doctors, stayed in most wards and had most scans and blood tests. Everyone in the hospital has been very nice to me. They always cheer me up and make me forget that I am in hospital with an illness.
Sometimes I even have to come into the hospital on Christmas Eve and last year, I got to meet Rita Ora and Idris Elba! They were really nice and Rita Ora had the prettiest smile.
Anyway, my family have ALWAYS supported me with my DBA and I’m quite glad they did. I am FOREVER grateful for them. It doesn’t have much of an impact on my sisters, but it makes them always push forward for me. It also means they have to check on me a lot. When I mean A LOT I mean A LOT. Hehe. I always had a nice time growing up and the hospital never limited me, but my parents tell me I was quite the challenge. I am actually happy for this a bit.
I have a double jointed thumb because of DBA and I like it. It’s never a challenge apart from my health but overall, I’m happy. I have made a lot of friends with the same condition as me through the DBA charity. We meet up once a year and go to activity camp together for the weekend! It’s really nice to play and be active with other kids like me.
What I would like to do when I leave school is study to become a doctor.
It’s because of Evelina London that I dream of being a doctor. I adore the hospital and most likely would love to work here. I am good with children. Evelina London is always a nice place to be: Happy 150th birthday. I kind of have a passion for medicine and yeah, that’s about it. Oh, and I love helping so helping others is a nice feeling. Just always helping and seeing people get helped is wonderful.
I give thanks to all of the staff that have helped me, especially Denise, Joanna, Patrick, Ariana, Jo, Kelly, Aurica, Rebecca, Endy, Maryan and Cavette.
One last thing for other patients: NEVER give up! Even if you have something that stops you, go and work around it!
There is always someone at Evelina London to help and support you.
I’m speaking from experience and trust me, help is always here.