Finding Help and Support

Finding the LGDA was a lifeline for Tracy and her family

Feeling that you belong somewhere – helps.  Knowing that you can talk to someone that understands – helps.  Being able to share your experiences so others can learn from it – helps.  So why is it still the case that after being diagnosed with a rare disease you are not signposted to a charitable group that can help!’ 

 

Just a Mum

Tracy Milne talks openly about the challenges of raising a child with a rare disease and why it is so important to be able to access support.

Alfie was born in June 2007 and was diagnosed with a rare disease when he was eight months old.  He is one of only 40 people in the UK with this condition.  This is Alfie’s mum’s story.

Living with a rare disease

“As a mum of a child with a rare disease, you are scared all the time – scared of making the wrong decision, scared of missing something, and scared of not being there for them when they need you.

Our son was so miserable, he cried a lot.  I cried a lot.  It was so hard in those early days when we had so little knowledge of what was going on and had no idea where we could turn to for support.  I would go to bed at night wondering if he would be alive in the morning.  No one could tell us what to expect.

I felt ashamed and blamed myself so as a coping mechanism kept it to myself. Only our closest family and friends knew what we were going through. It was only when we got the wheelchair chair that I knew I would have to face up to it.  I had it all rehearsed in my head what I would say when people asked; I had this little speech all prepared, and I would just press play and out it would come.  It was the only way I could cope.  I don’t know if it was the pity that got to me.  I am not actually sure how I survived at times.”

“On top of all of this there are the constant medical appointments and decision making. The doctors give you options and then say that it is your decision, but we didn’t feel at all qualified to make these decisions. Here you are looking to others to provide you with the answers and yet we seemed to be faced with the impossible challenge of trying to make the right decision for our son and we were terrified we would get it wrong.  Thinking back, maybe we should have made different decisions but you just do not know.  You have to weigh up the benefits against the side effects of the treatments.  You have to think of the quality of life.  What would be best?  It’s a big responsibility.  I am just a mum.  I don’t always understand.”

Support and Information

“You go through so many emotions but the most intense one, is that of isolation.  We could find no national support groups let alone one locally. Rare disease families like ours just don’t fit into any category and even to this day there is no obvious signposting for families faced with rare diseases in the Grampian area.

“We needed reassurances that what we were feeling, all the emotions, was normal.  If your child has cancer, there is valuable support available to help families through the complex practical and emotional rollercoaster ahead. Many families say they couldn’t have copied without that essential support.  We needed that support too but there was nothing there for us.  Our child does not have cancer but the impact of a rare life limiting, life threatening disease with no cure is just the same.

“What would have made things better would have been being able to speak to people, being able to share experiences.  Through my own research I now I talk to people all over the world and our stories are so similar – the anger, the frustration, the uncertainty, the lack of information, the fear.  Families need continuity; they need to see the same faces and people that know them.  They don’t want to have to keep repeating their story again and again to a different doctor.”