Rare Beauty - Ultra Rare

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Imagine if you are the parent of a child with multiple rare diseases and you find that your child is the only one in the world with those complex conditions, how would you cope?

We recently met Amara and her mother Reena when they kindly agreed to take art in Rare Beauty.  Their resilience and strength was obvious from the very first moment we met.  Reena shared with us what it was like to be an ultra rare mum.

"Amara has a number of rare complex conditions and the list is quite extensive.  Prior to her being admitted into hospital at 9 months, we were unaware that there was anything wrong, and it was only then that some of them were revealed.  They are all congenital, although we did not know.  She was admitted because she was in extreme pain and presented with tetany where her hands and feet were in spasm and she was unable to move them.  As a mum I just knew something wasn’t right.

We ended up in hospital for four months and it was quite critical.  They did some investigations and slowly her conditions were revealed and they seemed to multiply.  During that time in hospital she became critically ill and ended up on intensive care on life support and then she was on high dependency ward afterwards.  Amara has a range of treatments for her conditions and one of those is an albumin infusion because she lacks them.  They also discovered that she has a disease in her gut and so she had parenteral nutrition (PN) which is intravenously feeding because she was failing to thrive."

"I would struggle to say exactly what Almira’s conditions are as they are so extensive and complex.  This is the other challenge we face because there is no other person in the world we know of with Amara’s combination of diseases.  We are in no man’s land.  It is hard, it is really, really difficult to cope with.  The not knowing and my brain is constantly thinking about what is wrong with her, what is the right treatment, what is the right route to take because there is not anything to go by.  There isn’t a protocol to follow like you would with a patient with a typical disease. 

Everybody we meet including her consultants say that they do not know how to treat her multitude of conditions.  I ask questions and I know that they won’t have the answer but I still ask them to explore.  I do a lot of trying to solve it myself.  I didn’t have a medical background at all but I do now, I think."

"To be a parent of a child with rare diseases and to know that you are responsible for healthcare decisions is challenging, it’s really scary.  Often after an appointment we will have time to think.  The consultants can only advise based on their clinical expertise but then I have to consider Amara as a whole.  I look at her quality of life, her medical problems and it is complicated because she has so many conditions and that by rectifying one, the others are sometimes destabilised, and this is what I battle with.  When I sit down with a consultant I discuss the remedy for just one condition and I have to think about all the other issues she has.  She has a number of consultants all with different specialties and not an across the board one which is the role I feel I have to do.  Her specialists are not all in one location and we have never had a complete team meeting involving all her conditions. 

As a parent I have to constantly think about the whole picture and it is very complex.  Because I do not have a medical background then my opinion is not always given the weight it should be."

The Rare Beauty project has been designed to encourage people to want to know more about what is happening in the images.  We have introduced beauty into every day scenes that people with rare diseases find themselves and through these images we will tell the story of the people, their families, friends and hospital staff involved in their care.  We are grateful to BBC Children in Need for their support and to Birmingham Children's Hospital for their assistance. 

You can read about a surgeon's perspective to rare disease by clicking here.

If you wish to discuss this project or reproduce any images or story please contact ceri@samebutdifferentcic.org.uk.  The photographer on this project is Ceridwen Hughes (www.ceridwenhughes.com)


Ceridwen HughesComment