Sarah and Amber's Story

Our Story... 

By Sarah-Louise Frost

"It first became apparent there was a problem when my daughter Amber began to crawl at 6 months.  l began to notice that she seemed to favour one of her legs, and then when she tried to walk we would notice that one of her legs was dragging, this went on intermittently for a few months until after weeks of worry l took her to hospital when her knee swelled up one night.

"Our local hospital immediately diagnosed her with a fractured knee and so began months of x-rays, puzzled looks from doctors and questions about my care for Amber from health visitors.  After 3 more months of agony, which by this time when she woke in the morning her leg would be bent up and stay that way for most of the day, l left my job to care for her full time as the child minder l had employed could not care for her as she was.  Eventually a doctor at the local hospital referred her to Great Ormand Street.

"It was there that they finally diagnosed her with JIA. Ripples of shock whet round the family...how? why? surely that is only for old people?  We had endless questions and were looking for explainations.

"When Amber was 18 months she had the first of what was to be yearly and sometimes twice yearly experience of Cortisone injections under general aesthetic.
 
"My daughter whet from not being able to walk at all on her left leg to being cured over night! It felt like a miracle.  My naivety thought that it would all be over by now, but 9 months later it returned and this time worse and now in her right knee. The JIA has sytstamitacally worked its way through all her lower limbs (ankles,knees,hips) and now her wrists and fingers over the last 6 years.

"As well as JIA Amber is Hypermobile in her finger joints, and has deviation of the joints in her hands.  She also wears shoe raises to help correct a difference in the length of her legs.
 
"After 7 rounds of Cortisone injections she was referred for weekly Methotrexate injections.  This means we go to hospital once a week for injections and blood tests.  As with anything the side effects mean my 7 year old is slight for her age and can make her feel sick from the treatment, but I do feel the treatment has helped.  Before she would limp and have problems with her hand joints every morning, and also missed a lot of P.E and other activities at school.

"Sometimes my daughter says 'why me mum' or 'please can we just not go this week' but I have to explain to her without these medications her condition may mean missing out on the things she loves.

"I am lucky to have a bright little girl who really does not let this condition affect her as much as it could. People find it hard to understand and on days she is not having a 'flare' say 'but she seems fine' and some look at me like I am the one with the problem.  But they don't see the other side.  But as any parent with a child with JIA will know the problems don't stop with just joint problems.
 
"But thanks to the great team at Great Ormond Street Hospital, occupational therapy treatment and aids that are available to help her get on with things as independently as she can, we are living with it and making the most of the up times and all pull together for the not so good times.
 
"It is only recently l have got in touch with other parents going through the same and l would urge any parent struggling alone to reach out in the forms of forums/groups/twitter of some heartfelt support from parents, carers and patients in the same situation.
 
"I cope myself by focusing on how fortunate we are that it is not a life threatening condition and am going to be running to raise money in 2012 for charities relating to JIA."

 

The Childrens Chronic Arthritis Association (CCAA) would like to thank Sarah-Louise and Amber for sharing their story with us.

The CCAA is a registered charity (No. 1004200) run by parents and professionals

Headquarters
General Secretary: Caroline L Cox, Ground Floor, Amber Gate City Wall Road, Worcester WR1 2AH
Tel: +44 (0)1905 745 595 | Fax: +44 (0)1905 745 703 | Email: info@ccaa.org.uk

Patron: Prof. P Woo PHD. FRCP. FRCPCH
Patron: Prof. T Southwood BM. BS. FRCAP. FRDP. FRECPCH.
Patron: Dr N Hasson MB, ChB, FRCPCH.