Henry's Diamond Blackfan Anaemia Syndrome Journey

01/05/2026

And here we are! 7 years since his bone marrow transplant. The greatest gift he's ever received and one we will be forever grateful for.

Probably time for a long awaited update ☺️. Henry continues to have a lot going on health-wise and it can be a challenge to spin all the plates and keep on top of it all. Currently, we're awaiting an MRI scan for his spine (skeletal abnormalities courtesy of the DBAS which cause him muscular pain), an abdominal ultrasound and barium swallow (due to random vomiting that we're trying to get to the bottom of), lung function tests and a CT scan of his neck.

The neck CT is the one that we're most concerned about at the moment. As we know, Henry has a poorly heart, there are structural abnormalities that can't be fixed and it impacts on how well his heart functions. His heart function has got progressively worse over time and the percentage of blood it can pump is now in the low 40s, it means he gets tired really easily and can't keep up with his friends. Last summer he had an MRI scan to check his heart function, it took almost an hour and he had to follow lots of instructions whilst laying still for the whole time and having a needle in his arm so they could inject dye, absolutely hero! Following that, they started him on some medication to try and stop his heart from having to work so hard. At the moment, it's having no effect but we can only hope that it might do in time, they increase the dosage each time we go to London to have his heart checked. The doctors have talked about a heart transplant in the future but honestly, we don't feel able to give that any headspace at the moment 🤯.

Anyway, at the last appointment, they told us that Henry has increased pressure in one of the larger, important veins in his neck, which is likely caused by a blockage. This is from damage and scarring caused by his central line that was placed in the vein so he could have his transplant. The CT scan will show where the blockage is and they can then insert a stent to try and open the vein back up, by inserting a catheter up through his groin. It's all fairly horrendous to be honest and feels so cruel given everything he's been through, but this is what life looks like with a rare and life threatening genetic disorder. You're constantly putting out 100 tiny fires and hoping to catch them before they grow too big and get out of control. Once one is out, the next one pops up!

Everyone is so lovely and always ask how Henry's getting on, I'm sorry we don't always give the full picture but it's so hard and complicated to explain and it's easier to say 'he's ok', for lots of reasons (mostly, just so we can get through the day 🩵).

So, there's all the tough bits but there's also the wonderful, lovely bits that we hang on to and cherish because that's life, isnt it?! Celebrating the fact that he's even still here with us when the odds were so stacked, right from day one. This is a bloody hard road but it's worth every second as this kid is pure gold 🤩.

08/05/2025

Henry celebrated his 6th bone marrow transplant anniversary this time last week! Always a humble reminder of how lucky we are and how much we owe to blood donors, the wonderful NHS staff who take such good care of him and our lovely donor, Tom. Please donate blood if you can and join the stem cell register, you never know whose life you might save 😉 x

21/11/2024

Someone turned 9 yesterday! Happy Birthday to the main dude. It's been a difficult year, lots of not-so-great things have happened and Henry's had to adjust to a lot of change. New diagnoses, health issues, family emergencies, the list goes on. However, he continues to be the resilient little man that he always has been and marches on. As well as his 9th Birthday yesterday, he also celebrated his 5th BMT Anniversary in May which is a huge milestone and achievement, super proud 🤗. Can't think of another hooman I'd rather have spent the last 9 years with xx

31/12/2023

Happy New Year and a belated Merry Christmas to all of you. All in all we've had a lovely year, Henry's had some amazing experiences, alongside the very ordinary and we're very grateful for all of them! Topped off by a very special trip to Lapland courtesy of Make A Wish which was just as magical as it looks and made even better by the fact he got to share some of it with his friend James, who also has DBA. We see less of the medical teams on whom we used to rely so heavily but are thankful that they still keep a close eye on Henry and have his back whenever he should need them. He's growing into a lovely young lad, sensitive and kind but growing in confidence which is really nice to see and he couldn't have done it without his huge support network of the medics, his wonderful friends and family and donor Tom 👏 . Here's to a peaceful 2024 for all, we will try our best to continue to spread the word about blood and bone marrow donation plus all the wonderful work of DBA UK x

25/11/2023

It was somebody's 8th Birthday this week! Happy Birthday Henry. It was a day to reflect upon how far he's come and the huge amount of love and support he's had from so many people to get to where he is. We all continue to be very grateful and will never take it for granted.

Henry celebrated with a disco with his school friends and we celebrated by ensuring we're booked in for our regular blood donation slot 😀🩸!

04/05/2023

It was this chap's 4th BMT anniversary earlier this week. What a legend! We cant believe it's been four years since we took that leap of faith, time is flying by. So grateful that we get to see him living his best life and doing all the things he loves now. Please consider signing up to donate blood and popping your name on the stem cell register if you're able 🩵 xx

09/02/2023

Henry update as I'm aware it's been a long time coming!

We had Henry's clinic appointment with DBA wizard today. Henry went for an MRI scan in London a few weeks ago to check how much iron is left in his liver from all the blood transfusions he's had, excellent news as there's only a bit left and the docs think he will use some more of that up as he grows so it shouldn't cause too many problems. This means that after almost three years, we can FINALLY stop the three-weekly, 150 mile round trip to have his venesections (where they take his blood to bring his iron levels down) 🙌.

He also had some other good news, for the first time since BMT, Henry's chimerism (the percentage of his own blood cells versus percentage of donor cells) is now 100% donor 🥳. Shout out to donor Tom for the nice, strong bone marrow!

His heart is stable, it's still only pumping at 45% which isn't great, it means he gets tired easily and can't keep up with his friends too well but it's not going to improve so we're learning to make do. He will be having an MRI scan of his heart soon to give them a bit more detail and they will make a plan from there 🤞.

It was a bit of a treat to head back to St Mary's and see some familiar faces, half of the nurses that looked after him during his transplant didn't even recognise him as he's got so big now but it was really lovely to spend a bit of time with them and thank them for getting us to the point we're at now 🥰 x

25/12/2022

Wishing you all a very Merry Christmas 🎅. Thanks for sticking with us, this year has been full of ups and downs and many people we know have lost someone close to them, we continue to think of them and hold them in our hearts. I won't use this post to waffle on about Henry, I'll save it for another day but he is doing great and we are so thankful for it. Always mindful of our wonderful NHS over the holidays and the hard work and dedication shown, day after day. Hoping 2023 brings peace, kindness and more laughter for all of us (not sure about the 'peace' with these two but definitely the laughter 🤣!) ###

05/09/2022

50km officially complete! Thanks so much for all of your support, I'll get around to thanking everyone personally asap but I know DBA UK will be so grateful 🥰 xx

Later than planned update but I've finished!!! Got the last 2.8km in on Wednesday which brought my total up to 51.6km scooted throughout August. My thighs will never be the same again! Thanks so much for all of the support and donations, I am really grateful and DBA UK will be too. Henry joined me f...