A dad losing his baby girl to a rare disease.
I was asked to write a piece for rare disease day from a dads perspective.
I could have written a book but here is a short piece of my life with a rare disease in my family.
On the 26 of October 1996 ; my world fell apart.
My daugher Rebecca was diagnosed with a rare degenerative disease called Sanfilippo Syndrome at the age of 3 with a life expectancy of 14-18 years.
Our consultant had carried out a week long of tests on Rebecca and it resulted in us receiving the news. We were told about her diagnosis in a very matter of fact way , as if she had a common cold , on reflection we should been taken aside and told all the implications of what was about to happen to our baby girl in the years ahead.
I was quite angry with the way we are told this news which added to the hurt.
Rebecca became very hyperactive and her behaviour extremely challenging for years.
She had little or no desire to sleep which is a big part of Sanfillipo Syndrome.
I was working and found it very difficult to rest as my wife and I took turns in staying up with Rebecca at night just watching cartoons or singing to her. This routine went on for years.
As she reached the age of 7-9 she began loosing her skills , gradually her mobility gave , her speech slowly disappeared , she developed epilepsy , her spine and back developed problems which are treatable by pain relief.
Rebecca became doubly incontinent and wears pads. I’ve done things I’ve never thought I would do , like changing nappies on my now 23 yr old daughter, also changing pads when she menstruates, although my wife tries to spare me this task at times ;it is something we both have to do.
My baby girl is a shell of the girl she was or could have been because of a rare disease with no cure or treatment .
It devastates me.
We attended Crumlin until Rebecca was 16 and then we were discharged to Temple St Metabolic Unit which was great. We got good care in Crumlin but being the only case there we felt so isolated.
In the Metabolic Unit in Temple St. Rebecca got the attention and understanding she deserved.
We now attend the Mater Hospital’s Adult Metabolic Unit .
I think a rare disease is very isolating as you have little contact with others to share ideas and tips on coping.
With the big growth in social media explosion in recent years connecting with other parents or dads is great.
The illness has had an effect on all of our health. I struggled to come to terms with it.
What could I have done to change it ?
Watching her illness take over her body has broken my heart and still does every day.
There were times when all I could see was her funeral, it played out in my head regularly . I’d go over the arrangements and who was reading and who would help me carry the coffin; even whilst working or driving my car. I would end up with tears streaming down my face.
In work I’ve had to try hide it from my clients.
I can honestly say my heart and my mind have taken a beating all these years but thankfully I’m still standing and caring.
As a result I’ve been in counselling to try deal with it, once when Becky was 10 and again more recently.
I would strongly recommend counselling for any dad who finds it difficult as it helped me greatly.
My hopes and fear for the future is that I do hope Rebecca passes before we do as I dread the thought of her being cared for by this state.
I hope her passing is peaceful and not painful.
I hope we have many more years with Rebecca. Happily she has gone past the years we were told we would have which is great.
We have many good memories to cherish of her.
I hope newly diagnosed families are told their devastating news in a compassionate way.
I hope research continues and we find treatment or cures for our Rare disease families.
My hero’s in life are not rock stars or Hollywood actors, my hero is a mam, dad or sibling living with a rare disease in their family.
Kindly written especially for Rare Disease Day by my wonderful,supportive ,very kind friend Tony Woods.
To keep up with Tony and his wonderful family check out Miss Becky Loves Her Life