June is a very special month for us, it’s the month we became parents and it’s the month our amazing little girl will celebrate her birthday every year. Prior to having Delilah we never knew that June is also known as AMC awareness month. 

AMC is a term we’ve become quite familiar with since her birth and one we will never forget. AMC is an abbreviation of Arthrogryposis Multiplex Congenita that is a non-progressive rare condition which involves multiple contractures of the joints. For Delilah this means she is effected in hands, knees and more recently we learnt, in her feet.

Delilah’s legs were straighter than a ruler when born and her feet were by her ears she had no bend at her knees and her thumbs were in a fixed position to her palms. Her feet curved over like a ballerinas and she couldn’t really put them flat. Her hips were extremely tight and her legs didn’t want to come apart. 

Since becoming parents we have understood how hard you have to fight to be heard about your concerns you have for your children. When Delilah was born we were told “not to worry about her legs they would start to work in a few days it’s just because she was a squashed frank breech baby”. I was dismissed by 3 different consultants when I said I think she has arthrogryposis after researching for hours on end every day matching Delilah’s characteristics to medical research. Sometimes struggling to enjoy my new baby because I was in fear of the future. Covid obviously didn’t help matters and every blood test, MRI, medical appointments with multiple consultants, physio I had to attend alone. Josh and I shared the appointments when Delilah had to go in for leg casts because quite frankly it was traumatic and I was struggling to hold it together. 

In January, we were very lucky to get an appointment at Birmingham Children’s hospital. It was there Delilah was seen by a fantastic consultant who gave us the diagnosis of arthrogryposis by just walking into the room and looking at her, a diagnosis we had been fighting for, for over 7 months. That day she booked Delilah in to start leg casts, even the consultant was so angry this hadn’t been picked up sooner as children with this condition ideally need to be in casts within the first few weeks of life to gain the best possible movements in their joints. Delilah would be turning 8 months and we would be trying to undo a lot of missed time with the possibility casts wouldn’t be a success. 

Long story short, thankfully the distress, tears, pain and sores that the casts caused to Delilah we were so lucky that we managed to get one leg to bend to 90 degrees which is comfortable enough for her to sit on a chair or drive a car. Her other leg is currently hovering 75ish degrees. Through her intense physio and the work we put in with her every day I will make it my job to get that other leg to 90 degrees. If not more, a dream of ours is to one day see Delilah ride a bike and be able to do it with ease and if she continues to be the resilient and strong little girl she is, I know she will. However, right now our focus is getting her to crawl (in her own way) and walk (again, however this may be). 

Why am I writing this 1 year after her birth? 

It’s only now that I feel strong enough to talk about it and even now I have wobbles and days where I want to cry for her/me/us and the dreams you have when having a baby. The other reason I want to speak up about AMC is because I HAVE to be an advocate for my daughter and this condition. I have to bring awareness to it, because of its rarity there is so little research and funding around this condition. So many babies/children are being missed or not given appropriate care because it’s just not known well in the medical world. 

Here in the UK cases are so small it’s been hard to connect with someone in the West Midlands who has the same condition. However, how lucky we are to be in the UK! The NHS have obviously covered all cost of Delilah’s medical care (which is now a pretty extensive list) however, in other countries where free healthcare isn’t available parents are having to fight for insurance to cover the costs of medical care for their child. Whether this be consultations, interventions, operations, equipment such as walkers or wheelchairs. In all honesty I can’t even bare the thought of mentally going through this as a parent and having to fight to get funding every step of the way. 

So, as Delilah turns one.. (the most special brave little girl I know) she is also the most spoilt and luckiest girl too and we as a family and I’m sure her too would prefer if you could donate anything to this charity, which is run to support UK families with children who have AMC by running meet ups and events. As I mentioned it is like trying to find a needle in a haystack for a parent who understands this condition and is living it alongside you. Not only that I think it will be a complete off chance Delilah will ever meet another child who has this condition who faces the same challenges and adversities she does and will. 

I think it shows how rare and how much this charity needs support in that they have less than 1000 members on Facebook. 

That would be a fulfilling birthday present for Delilah, the gift of hope and support In meeting other AMCers and having an event/weekend of activities for children where they don’t need to worry about being different because everybody is the same. 

If you read this thank you arth-ro-gry-po-sis is now part of your vocabulary and if you donated just know the money you have given how little or big will make a huge difference