Battens Disease awareness. Michell

Dead, died, death words that fill a persons soul with absolute mind numbing fear!
When I heard those words for the very first time regarding my daughter I suddenly became deaf…
The room was full of medical professionals looking at Rosie, Mike & I. I could see the pity & sorrow in their eyes as they said those words again…..then nothing!
My eyes looked at Rosie & I though how? I looked at Mike & thought why? And then I looked around the room….mouths were moving saying things…..but I felt I was drowning….I couldn’t understand & make out what was being said! All I could think was how did this happen? Why her?
My heart broke in that very moment 15th December 2011. My heart has never recovered…..it remains broken to this day…
My beautiful 6 year old daughter died 9 months & 5 days after that fateful date…
Life now is so different, days seem longer, the nights more so. I live but I’m dieing at the same time, I breathe but feel I am suffocating…..
Yes life goes on for me but never quite the same way as before……and it never will.
Batten disease stole Rosie from the family that loved her, but it also stole our families future…..

People are under the misconception that grief starts when a much loved person dies. In actual fact if someone you love is diagnosed with a terminal illness the grief begins before they die.
Once the initial shock of diagnosis has had a chance to be absorbed….the grieving starts….
You begin grieving because you know of all the future milestones will not come to fruition. All the plans that have been thought out & played in ones mind will not happen.
You begin to grieve their loss long before the death takes place, I suppose one could call it a living grief.
For a parent it’s the worse grief there is & a parent will never “get over” losing a child. For when the child is lost, so are all their hopes & dreams…..

Batten disease – the first time I heard this term it was slotted in amongst other diseases & actually didn’t mean anything to me at that time….little did I know how it would affect Rosie & the rest of the family.
Rosie was an undiagnosed medical patient for a long time, too long in fact. When we finally had a diagnosis for her it was after we nearly lost her to pancreatitis. She was in so much pain & so ill we were told to prepare for the worst, a sentiment no parent ever wants to hear.But my little girl being the fighter that she was fought hard against the pancreatitis & made it, although she was not the same little girl as before…..and she never would be.
A month after that illness nearly took Rosie from us we had an answer to all her other problems that had steadily been getting worse….
My post from yesterday explains what it was like hearing that devastating news….

All week I have been posting different aspects of batten disease and how they have affected Rosie and the family. Now I want to talk about how it affected Rosie and exactly how it took her away from us all.
Rosie was diagnosed with late infantile batten disease – this is how it affected her :-
First she started with seizures, not many to begin with, perhaps 1 or 2 a month even going as long as 7 months without a seizure.
Next she began to lose her balance, becoming very wide spaced and falling over an awful lot.
Next her speech disappeared, first slurring of words then nothing.
She had a walker to assist her at first then moving into a wheelchair.
She lost the ability to control her bladder and bowels after being completely dry by day and night.
Her appetite waned and it was very difficult to get medicine in her let alone any food or drink.
An NG tube was placed in her nose and down to her stomach so she could receive fluid meals and she started to put on a little weight.
Her eyesight went and she could no longer see.
She started to scream a lot and cry, not surprising really!
She became more immobile losing the ability to hold her head up and developing a curve in her spine due to lack of muscle tone.
The little girl I knew was fast disappearing before my very eyes…
The NG tube was replaced by a PEG in her stomach as it was deemed safer.
She suffered an acute case of pancreatitis which almost finished her off! She was never the same after that…
Lots of infections in her bladder made her terribly ill, aspirated pneumonia as she was vomiting so often.
She suffered from extremely cold, painful hands and feet due to the illness and would benefit from regular massage to encourage the circulation.
Eventually her body began to close down, needing a catheter which I replaced on a regularly.
Her stomach stopped absorbing medicines and food, so all food was stopped and her drugs went in through sub cuts which are fine needles placed un der the skin into the fatty tissue, she was now on a down wood spiral and there was nothing we could do to stop it
Seizures were coming by the dozen every day…
Eventually she slipped into a coma…
My darling daughter fought so hard but in the end the disease won and we lost her at 3.10 am 20th August 2012 on her sisters 17th birthday…
Mike and I were right by her side as she passed away….
Hard to read I know but right now lots of other much loved children are suffering and WILL suffer the same fate….
Awareness is the key, please remember my darling Rosie this weekend and all the other children who have died from this terrible and devastating disease, ripping them from the families who love them.
Batten disease awareness weekend this weekend.

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About Daddys with Angels.

We began as a group for grieving fathers and men in families, but other family members asked to join us. We now also have a group for Families with Angels dads and other male family members and siblings under 18. We have experienced and live with the harsh pain of loss and we hope we can bring other comfort with what we do, To find us please search for us on face book or www.daddyswithangels.org/. Hugs to you all and floaty kisses to all your angels. We retain the name Daddys With Angels.
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