For the past 7 months, I have been one of the estimated 2 million people in the UK with Long Covid. It has prevented me from doing most of the things I used to take for granted, but I am slowly improving and am hopeful that one day in the future I will return to my pre-Covid self.
What the last 7 months have given me, is a very small glimpse of what it is like to live with a condition that is, as yet, poorly understood.
Anya, the beautiful daughter of my friends Katherine and Abhishek, has a condition called Alternating Hemiplegia of Childhood (AHC), an ultra-rare neuro-developmental disorder affecting less than 1 in a million people. The way Anya and her family face the daily challenges of her condition is truly inspirational. The AHC champions as they are known are faced with frequent, varying episodes of paralysis (hemi-/quadriplegia), abnormal eye movements, painful muscle stiffness (dystonia), sometimes seizures, developmental and cognitive delays, and abnormal muscle movements. The severity of AHC and the types of episodes can vary between individuals, the first symptoms occurring before 18 months old.
Ongoing research is vital. Currently, there is a project underway to better understand Alternating Hemiplegia of Childhood at Great Ormond Street Hospital. However, more funds are required to complete it.
In an attempt to help my recovery from Long Covid, I have bought a static bike to try to keep myself moving at a very basic level. Dependent on issues with breathing/fatigue/muscle and joint pain some days I manage 1km, some a very slow 5km, some none at all!
To keep myself motivated, I have set myself the ambitious target of very slowly cycling the equivalent length of the “Tour de Yorkshire” (612.5km) between when my bike arrived and when I fully recover.
I would love something positive to come out of the last 7 months so I am asking you to come on my gradual journey back to health by sponsoring me in this venture to support the vital research into AHC. No amount is too small and it is my hope that one of the 2 million Covid “Long-Haulers” can do her very small part to help the amazing 1 in a million AHC champions.
Spoiler alert, having only cycled 32km so far, it’s going to take me a looong time!
Andrea is an inspiration to many of us. She would like all donations to go directly to AHC Research at Great Ormond Street Hospital in the link below:
Why don’t you leave a comment below with your wishes to Andrea and the work she is carrying out for Anya and all our AHC Champions