Aaron Fynes
Aaron Fynes

“Aaron was the eldest of my 6 children and the one who shaped our family into the family it is today. I had always wanted to be a mother so finding out we were expecting was a dream come true. We were that enthusiastic we even had his name picked out before he was born.

Aaron meaning man of strength couldn’t have been more appropriately picked for such a courageous, determined and loving child.

Aaron was born on 17th September 1985. He burst into the world full of potential.  I remember holding him for the first time and finally understanding the true meaning of unconditional love. He was absolutely beautiful. Sadly, he spent the first 6 months of his life in the Rotunda Hospital. He lay there, his body covered in painful sack filled blisters the size of apples, my small baby denied of being held and hugged in my arms for fear that we would do more damage to our beautiful son.

I was so confused, why had this happened to me? – Unfortunately EB was virtually unknown in Ireland back then, so support and advice was thin on the ground. Driven by a mother’s instinct and feeling helpless day after day, when we heard about a UK hospital that knew of EB it was a blessing. Myself and my husband Val discharged Aaron from hospital against all the advice of the doctors and made the first of many of trips to the UK to finally get help for our son.

Life as we knew it changed and became a vicious circle of bandages changes and hospital appointments. One of the many amazing qualities that I will remember about my beautiful son, is that he never seemed to show any resentment when later he saw his younger brothers and sisters playing. Because of the obvious physical limitations that EB enforced on Aaron it sometimes prevented him from being included in the games. Aaron would instead sit contently watching them and always had a smile on his face. His passion was playing pool and he would hang out with his dad and his uncle Michael most Sundays in the pool hall in Killester, where he became a well know regular.

Aaron and Mum
Aaron and Mum

Aaron’s day would start at 6am to do the first half of his bandages and end late into the evening when we would finish them. You would hear songs like “The rocky road to Dublin” being blast sky high as Aaron used music to manage his pain. He would sing from the bottom of his lungs as we sat for hours removing bandages, bursting blisters and wrapping him again to help protect his body from further breakdown and infection.

In October 2000 we moved in to a purpose built house named “Aarons Haven” to allow Aaron the freedom in moving from room to room in his electric chair. He loved that he could get out to the garden and sit and watch the sheep in the next field. Although he was confined to a wheelchair – he enjoyed the sense of total escapism as he looked out at the green fields for as long as the eye could see. I sometimes thank god that the house was a detached house as on one occasion after finally getting into bed in the early hours of the morning and falling fast asleep only to be woken all of a sudden by “Peggy Gorden” being blasted from Aarons room at 4am in the morning. Never one to let the fact that his hands were completely bandaged he had used the tip of his nose to turn up the music.

He attended school until he was 12 and enjoyed the company of the others in his class. He was a practical joker and enjoyed being there with his friends. Aaron’s faith, love of his family and love of music is what got him through. He had a warm and inviting personality and a cheekiness about him that captured all who met him. He used to have the nurses in the UK in stitches with his quick wit and rebel songs.

His body was practically 90% covered in bandages and towards the end of Aaron’s life, he had little or no skin left on his back. He had developed other complications due to EB such as osteoporosis, dislocated hips and scoliosis along with his sight being affected particularly in the last year.

Despite all of this he was so open to having his picture taken to help develop awareness around EB, when his dad and I committed to being some of the founder members of what has become the charity DEBRA Ireland with other parents, he was so open and happy to help in any way he could.

Aaron never complained, he was a happy child and often tried not to cry even when in the severest of pain for fear that he would upset me. But in October 2001, I knew something was different. He wasn’t getting as long from the pain relief and one afternoon sitting at home Aaron, failed to recognise me when I walked into our sitting room as his sight was beginning to fail him.

Aaron and his Dad
Aaron and his Dad

Sadly Aaron health declined rapidly after this. The last few days were terrible. I remember the night before sitting with him and he turned and said that he had words stuck in his chest. He didn’t want to say them because he was afraid he would upset me but he was asking Jesus to help him. He began to describe images he was seeing in his room and although initially we thought it might have been the medication, Aaron was very much in his senses. He was able to remember the list of his medication and even asked the nurse for a cup of tea with two sugars and sat up and drank it, shortly before he died. We now believe these images and experience to be the beginning of Aaron’s journey to the next life.

As we kept a vigil next to his bed  watching him get weaker and weaker, heart broken I asked him “ if you could go somewhere, where there was no pain would you go there” and he turned to me, as his weak body lay lifeless on the bed and said “ can you come with me mammy”

Secretly, I would have given anything to hold onto my son or indeed go with him, but I answered him, “not yet son but I will some day, but your nanny and granddad are there, so they will look after you”

His reply was “alright mammy I’ll go then”. Then he turned to his dad and told him to look after his mammy. Although he was very weak at this point, Aaron waited till all his brothers and sister arrived at the hospital to say goodbye.”

Aaron died on the 30th October 2001 at 2.30pm with his family around him.

Aaron is remembered every day by his mam, dad and his brothers and sisters and all those who loved him.

The following is a poem that was written by one of the many people who got to meet Aaron and captures the essence of the impression he made on anyone who met him.

A Golden Butterfly 
I met a boy once
Through work not play
He had to be bandaged each day
His name was Aaron
He had golden hair.


Most days he spent in his wheelchair
A rare disease attacked his body
No known cure, gave little hope to anybody
He’d always greet you with a smile
Which made my heart heavy for a while
His home was always full of song
That made the day not so long.


His pain on earth was hard to bare
God only knows why he was there
Maybe it was to show us how to care
And make us fully aware
That life can be hard and painful for some.


Though he carried a cross
That was hard to bare
He would have no pain in the long run
His bravery knew no bounds
Each day as the sun came up
Was a battle to be won.

On his passing he finally got his release
Free from the pain, he is at peace
His body is as light as air
He is in heaven as we speak
Flying high with all the spirits in the sky
A golden butterfly.

Aaron.

 

Clare Maypotter