11 October 2018
“Every morning we are greeted by this smiling happy lad, despite the fact that every night Henry endures an uncomfortable half-inch needle in one of his legs for over 12 hours for the foreseeable future. He suffers this drug administration method because we've exhausted all other options. However, the drug is only just keeping Henry’s severe iron overload at bay. Although it’s scary, a blood stem cell donation could not come quick enough. If we can’t find a matching donor soon, Henry’s heart and liver could start failing.”
Since his very first day of life, Henry has been fighting against Diamond Blackfan Anaemia alongside a unique gene mutation that has not been found in anyone else in the world.
Henry’s mum, Zoe, opened up to us about what life is like in Henry’s unique world and shares insight into the highs and lows of one family’s search to find a blood stem cell donor.
What does a day in the life of Henry look like?
For the most part, it’s pretty normal! However it very much depends on how anaemic he is. We have to adjust Henry’s daily routine according to his blood levels and the timing of his regular blood transfusions, which he has to endure every three weeks. The more anaemic he is, the more tired he becomes. Henry’s days generally consist of walking the dog with Daddy, helping me make breakfast, adventures and play time with friends and an afternoon nap. After dinner and his bedtime routine, comes the not-so-fun stuff.
Henry is on an infusion pump 5 nights per week which means we have to pop a needle in his leg and let the medication run through for 12 hours overnight. We all dread that part of the day as Henry gets really upset, but it's lovely on the weekend when he gets a break from the pump and we can focus on story time and sweet dreams without the trauma of needles. Henry struggles to sleep on his own and is in a lot of pain sometimes. I can't remember the last time we actually got an unbroken night’s sleep! Sometimes he just needs a cuddle and reassurance, but sometimes his pump might get pulled and makes things pretty uncomfortable for him. It's tiring but we really don't mind as it’s always nice to have a Henry cuddle!
What are some of the daily highs and lows?
Highs: he's such a happy little boy and he absolutely loves life. Henry takes such joy from such simple things like playing in the bath, collecting leaves in the woods or throwing stones in the sea. He loves people and going out to see new places and try new things so we try to do that as much as we can.
Lows: It’s really hard to contend with his medication infusion pump during the weeknights. We have to physically hold him down to put the needle in his leg each night and it’s the same in the morning when we take it out. He has endured this for the past year but nothing seems to make it better. We also have to make constant adjustments to our schedule depending on how anaemic he is. This can be really difficult both practically and emotionally. Every three weeks we have to sit and watch the life drain out of him through a blood transfusion and it doesn't get any easier seeing him struggle. It makes us all pretty sad, anxious and it can be quite isolating.
What makes Henry’s situation so unique?
Diamond Blackfan Anaemia (DBA) is such a rare disorder and everyone has slightly different symptoms and treatments. We found out that Henry was poorly before he was born which is quite unusual for DBA. Henry is also the only person in the world to have a specific gene mutation which is linked to myelodysplasia.
Henry has had to have regular blood transfusions since he was born so he has never known any different. As a consequence of the transfusions, he suffers from iron overload and requires a medication infused pump for 12 hours each night.
Henry also has some immune issues so we have to be careful about germs and have to take him to the hospital as soon as he gets a temperature. As part of his syndrome, he has problems with his gut and feeding becomes really difficult. We often get told that Henry looks "really well", which is a blessing and a curse. He doesn't have any physical abnormalities that can sometimes be found in DBA and the symptoms of the anaemia can be quite subtle. This makes it challenging to explain that there's a lot going on beneath the surface that they can't see.
What would it mean for Henry to receive a blood stem cell donation?
It would be absolutely life-changing for all of us. It would hopefully give him a quality of life that anyone would want for their children. It would mean he is no longer dependent on blood transfusions every three weeks simply in order to survive. He would also have a fully-functioning immune system so we wouldn't need to be worried about fevers, infections or rushing to the hospital. We wouldn't have to worry about iron overload and the damage to his organs caused by all of the transfusions. He also wouldn't need to worry about the nightly needles and medication pump. We know it's a procedure that comes with many risks and complications but it’s ultimately his best chance for long and healthy life.
How do you stay positive and look after yourselves as a family?
Henry makes this quite easy as he's such a lovely boy and great company, but life has changed a lot in a way we weren't expecting or prepared for. We’ve had to make a lot of compromises and sacrifices to make it work. I feel silly sometimes because I'm a trained Clinical Psychologist and I’ve spent my career teaching others how to look after their mental health and wellbeing but I don’t always take my own advice!
Henry needs a lot of care and attention at night so this really restricts what we can do. Craig, my husband, misses a lot of time from work due all of the hospital appointments. He tries to make this up where he can so it can be really hard to find time for ourselves and for each other. We treasure family time and the little things like taking a stroll on the beach with the dog. Henry is happiest when we're all together so that's what we try and do. We're so grateful to have such supportive family and friends and we’re surrounded by love and care. It would be impossible to do it all without them.
Thank you to Zoe for sharing this incredible insight into Henry’s daily life and highlighting why it is so important for us to find Henry a matching blood stem cell donor. The more people who register as potential donors, the more hope Henry will have of living a healthy life. If you haven’t registered yet, why not register now. For someone in need, you might just be the most important person in the world.