I will spend Christmas giving my daughter life-saving injections for her rare blood condition – but next year could be different

Her genetic condition has no cure, and while I wrap up the Taylor Swift CD and psychedelic leggings that Ana also asked for this Christmas, I reflect on how much she has been through and what her life might look like in the future

Ana has Von Willebrands Disease type three: an extremely rare and severe bleeding disorder with symptoms similar to haemophilia

Seven years ago, we arrived home for Christmas from Great Ormond Street Hospital with Ana, our precious three-year-old daughter. Not quite the Nativity story, Ana had just had a device fitted under the skin which would enable us to inject her with life-saving medication at home, rather than in hospital.

Christmas was therefore spent anxiously learning how to get a needle into her soft, raw skin where the surgical incision had been made.

This strictly sterile procedure had to be performed every other day amidst the chaos of festive preparations, and underscored by the piercing screams of our newborn son. I mastered putting on a brave face for my children, but inside I was a weeping, quivering mess of a mummy.

Ana is nearly 10 now and we have found a new kind of normal. Her device was removed in hospital last year and we now inject the medicine directly into Ana’s veins – no mean feat, I can tell you.

When I asked her what she would like most of all this Christmas, she said “not to have my stupid medicine!” Ana has Von Willebrands Disease type three: an extremely rare and severe bleeding disorder with symptoms similar to haemophilia.

Currently there is no cure for the rare genetic condition that afflicts Ana

Four times a week we inject Ana with the blood protein that she lacks and has never been able to produce. Without it she has spontaneous bleeds that cannot be stopped: bleeds that mercilessly affect any part of her little body; bleeds that have already caused arthritis in her ankle and which haunt her daily life like a ghost.

Unlike haemophilia, which predominantly affects men and is treated using synthetic drugs, Von Willebrands Disease has no gender bias and is currently treated with human derived blood products. Well aware of the contaminated blood scandal of the 1980s, we use this medication not out of choice but out of necessity; we desperately want safer medicine but there just aren’t enough sufferers out there for the clinical trials to be a priority.

When we read recently about the successful gene therapy trials for haemophilia a, we felt a real sense of hope for the first time since Ana’s diagnosis – what if a cure were a real possibility for Ana one day? Imagine what that would mean for her future... but as with so many of these amazing trials, funding is a big issue. Funding and, more importantly, public awareness.

Ana will soon have to start taking more responsibility for her condition: self-injecting and managing her joint pain with drugs and exercise. As a young woman dealing with periods as well, Ana will require a self-awareness and resilience rare for girls even twice her age. There are no choices for her about going on the pill, for instance. She will have to take it or risk too much blood-loss. There is no question that when she bleeds it will be heavy. As her parents, all we can do is be here to support her and fight hard for her future.

Currently this genetic condition has no cure, and while I wrap up the Taylor Swift CD and psychedelic leggings that Ana also asked for this Christmas, I reflect on how much she has been through and what her life might look like in the future. We love her beyond words and are blessed to have this remarkable, tenacious young lady in our lives.

Still, the best we can offer her this Christmas is to put her injection off until Boxing Day.

Read a mother’s account of Ana’s bleeding episodes on Medium or via Twitter @sarahferdinands.