Our good friend Aaron is a keen cyclist and has decided to ride 250 miles around East Anglia this weekend on Saturday 15th September, so we’re trying to raise funds to support him.
The funds will be given to DBA UK, our primary charity who supports all of the families affected by Diamond Blackfan Anaemia.
Please help us by visiting the link below, there’s not a lot of time left so we’re asking everyone to donate what you can asap.
We’ve had a busy few weeks speaking to journalists with the aim of raising awareness of DBA and the vital role of DBA UK, DKMS UKand stem cell/blood donors. Please take a look and share the post if you can x
Hello! People keep asking how Henry is doing and reminding me that I’ve been utterly useless at keeping everyone updated over the past few weeks so I’ve promised to do better. He did us proud last night, first night in his ‘big boy’ bed and he slept through. This is quite a big deal for us, Henry’s always been a terrible sleeper because of his tummy problems and his pump, so we were taking a bit of a gamble! We’d kept him in sleeping bags for longer than we wanted to to stop him from pulling his pump out or getting it tangled up, so for him to manage with it in all night and no bag was amazing x
40th blood transfusion today! Also some rather difficult news. Henry’s iron levels are just going up and up so we had a chat with London today and they’ve said that we have to make some changes before Henry’s organs are permanently damaged by the iron. Henry will have to have a ‘port’ fitted under the skin in his chest, a little device that means blood and medicine can be fed straight into a vein close to his heart. He will need this so that he can be attached to his pump and have his medication running 24 hours a day, 7 days per week, to try and get rid of some of the excess iron. We’re desperately sad it’s come to this but obviously have to do whatever we need to to keep him safe and give him the best chances, we’re hopeful that it’ll be a short-term thing of up to 12 months and then Henry will be in the position to have his stem cell transplant as his iron levels will be low enough to make it a bit safer for him. We’re also having to move him on to a 3-weekly blood transfusion schedule as the amount of blood that can be safely put in just doesn’t last him 4 weeks any more.
I think I must’ve known what was going to happen as I bought him a new Hey Duggee back pack last week, we’ll be putting that to good use when he has to carry his pump around on his back all the time!
We’re trying to be upbeat about it but quite honestly, we’re deeply upset as we know it’ll really affect his quality of life (he lives in the water and won’t be able to get wet when he has his pump attached). It feels so unfair but Henry always makes the best of everything so we’ll follow his example 💪 xx
Normal service has resumed! Thank you very much for all the love. Henry’s feeling much better, they think it was gastroenteritis but he’s almost back to himself 😁 (am wondering if we may have introduced Jurassic Park a little too early…😳) x
Didn’t expect to end up back here so soon! Not the way we’d hoped to spend a Saturday night but Henry’s got a fever and we have to be extra careful with him because of his poor immune system and the fact he’s just had a blood transfusion. Fingers crossed he’s feeling better soon 🤞 x
We’re at the hospital getting Henry’s 39th blood transfusion today and for the first time, I noticed something very special…the ward is covered in sunflowers. As you may have seen, we’ve posted a few times about GIJoey and we’re heartbroken to say that he is being laid to rest today. His family requested sunflowers at the church and it seems so fitting that we’re spending the day surrounded by them. This one’s for you Joey, we’ll always think of you when we see them x
Late but important one, shout out to all the Dads and general men-folk who play some role in looking after kids. Henry and I are very lucky to have some excellent role models in our family, thank you for taking excellent care of us ❤ x