Two years old today and what a two years they’ve been. This time two years ago, the hospital had me in for monitoring every 1-2 days because Henry had failed every test they’d done on him and they were pretty worried about him. This was supposed to be a much anticipated non-hospital, ‘rest’ day but some time that morning I’d realised he wasn’t moving so back to the hospital we went. A few hours (and a quick thinking consultant and emergency c-section) later, Henry was here! They said good job too, otherwise he wouldn’t have survived as he had so little blood left in him. I didn’t get to see him at all the day he was born, we were both too poorly but the NICU staff were super and gave me a photo of him. They said it was 50/50 whether he survived (he’d already overcome 20% odds so we knew he could do it ) and the rest is history.
30 blood transfusions, more hospitals, needles, biopsies, tests and medication than you can shake a stick at, but still going strong and absolutely loving life. He’s so much more than DBA though, he’s our absolute joy and the only reason we need to get up every day
Please share this post, we need to get it to as many people as possible to get Henry the help he needs and his chance for a better future.
With only just over 100 cases of Diamond Blackfan Anaemia (DBA) in the UK, we all know each other. We have a Facebook group and meet up every year for an annual conference and get together. It’s a tight knit family!
Which brings us to our desperate friend. Unfortunately little Chloe aged 7 has now started to produce anti-bodies, her body rejecting donated blood, making her life saving transfusions each month increasingly difficult. A very serious situation for someone with DBA and bone marrow failure.* Chloe relies on blood donation to stay alive.
*Henry is also blood transfusion dependent
Now a big drive has begun to find #AHeroForChloe, in other words a stem cell donor match. Once correctly matched stem cell’s are successfully transplanted, Chloe’s ability to produce her own blood negates the requirement for troublesome blood transfusions. This is same procedure and outcome we need to make happen for Henry hence our fundraising drive.
Donating stem cell is painless and undersubscribed. Only a few percent of those on the register are actually asked to make a donation but those that do, a life is saved. The donation process is easy too…
Oh, hello £15,000, we’ve been waiting for you 😁! Well, we’re officially up to target no.1, we have enough to get our name down for the first cycle of IVF. We are so chuffed, a huge thank you to everyone who has helped us along the way so far. We’ll be on the phone to the clinic first thing on Monday to get us booked in! 💃🍷🎉
Brilliant quiz night last Thursday night (5th October), thanks to all who came! 10/10 for team effort, it was a close call with only two points between 1st and 2nd place 😁. Huge thanks to Boadicea Bar & Restaurant for having us and to quiz master Madeleine Norris for all her hard work. We raised just over £150 and are very much considering doing more of these events. Watch this space…
Michael Jackson tribute act by Tej’ai Sullivan from Chicago Illinois USA helped raise over £1,000 in just one evening at the United Services Club in Harwich, Essex.
The most gigantic thank you of all, to the lovely Annie Farthing, for donating all the money made last night to Henry’s treatment – £1092.67 in total, absolutely amazing and we are beyond grateful to Annie and to everyone who came and supported on the night. The evening simply wouldn’t have happened without her!
It seems our journey with Henry is becoming more interesting to the mainstream media. The day after our piece going out on BBC Look East news last Wednesday (13th September 2017), the East Anglian Daily Times made it clear they wanted to run our story for their weekend edition paper.
Zoe (mum) bravely tidied the house last minute along with getting herself and Henry ready for the photo shoot that had been sprung upon us.
It’s fair to say that it’s refreshing to have a news story printed that’s not got an agenda so hats off to the writer and editor at the East Anglian Daily Times.
Unfortunately we haven’t quite had the level of donations we would’ve wished for considering both the BBC piece and this news story were delivered to the entire region. But we’re still making steady progress thanks to all of our fantastic and generous donations. We’re now very close to £12,000 via our JustGiving.com page along with offline donations. Amazing!
If you haven’t made a donation yet, please please do so. Even a very small offering will go a long way. The JustGiving.com link is on the right. Please also sign up using the email address form on the right, that way you can let us know you’re supporting us.