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When a child has a chronic condition like neuronopathic Gauchers disease (nGD), the challenges can be a real struggle, writes Tanya Collin-Histed.
The overwhelming implications for children having a disease can sometimes take over their lives and it is often easy to forget that they are children first and foremost. It is important that they feel 'normal' and are allowed to be themselves, not just labelled as someone with a long term condition which can easily happen with all of the professionals often involved in their lives.
Life Can Be Tough
My daughter is now 11 and physically she is doing very well. However for some time I have been concerned about her. I worry that she is unhappy, life is tough for her, school is a challenge and her low self esteem is making her dislike herself. As a result she isn't enjoying being young as much as she should be.
For a parent this is hard. I look at her friends who smile in the playground, talking about what to wear or what they will do at the week end; whereas my daughter looks sad and I know that she would much rather stay at home with me.
As parents we may never understand how it feels to live with an illness that makes you different and may prevent you from being like your friends or from achieving the things that you aspire to.
Talking To Others
I began to wonder if this was something that other parents of children with neuronopathic Gaucher disease were finding and wrote to some parents who have girls with neuronopathic Gaucher disease between the ages of 8 and 18 years old. I found that their concerns were not that different and that many of the girls were experiencing similar problems like low self esteem, issues with friends and difficulties at school.
I decided to tap into the one person who knew all of these girls and the person I believed that these girls would trust; Elin Davies-Pope, the Clinical Research Nurse at Great Ormond Street Hospital, who is working on the clinical trial that many of the girls are involved in. In turn she recruited Niamh Finnegan, the Clinical Nurse Specialist for Lysosomal Storage Diseases at Great Ormond Street Hospital. I met Elin and Niamh one day and together we discussed the girls and my concerns about the impact that having this disease may be having on them.
Aunty Elin Day
'In light of these issues, we organised a day out to encourage the girls to socialise together and to share their experiences of living with neuronopathic Gaucher disease. We decided that part of the day would be focused on an activity which every child could enjoy while the afternoon would focus on developing skills to deal with the impact of the disease on their day to day life.
The first day out took place on Saturday 3 December 2005 when a group of eight girls aged between 8 and 18 years old went on the London Eye followed by takeaway pizza for lunch and then a session at the Institute of Child Health with Elin and Niamh.
Below are quotes from a few of the girls that took part in the day:
'I enjoyed the day with the girls and Elin and Niamh. It was very nice. We had a lovely time chatting and sharing our birthdays. We talked about our fears and what we had been up to and we jotted our happy times in our diary. We had a lovely lunch and a ride on the London Eye' - Radhika
'Hello, I had a really good time in London. It was lots of fun and I hope we can do it again soon' - Sara 'I really liked the Aunty Elin day because I like being with other girls that feel the same way I do' - Maddie
Plans for the Future
Following the success of the first Aunty Elin Day, the Gauchers Association has been extremely fortunate to receive funding from a charity called Wednesday's Child which has agreed to sponsor another Aunty Elin Day in the summer. The financial contribution will enable the continuation of this type of support which is an invaluable opportunity for the children, in the difficult challenge of living with their disease. The second Aunty Elin Day is taking place on 3 June 2006 and due to popular demand from the girls, the activity is a sight seeing trip around London on an open top bus.
This is a long term project and it is hoped that due to the small number of children with neuronopathic Gaucher disease, these sessions will allow them to develop close friendships and a support network which will improve their ability to deal with the difficulties they face. These friendships and support network will be further strengthened through regular contact and the opportunity to take part in various activities.
Gauchers News Contents
Source: Gauchers News June 2006.
© Copyright Gauchers Association 2006