Caring for Special Babies & Children/Adults
Support Organisation for Trisomy 13/18 - (Patau's/Edward's Syndrome)


Mary & Derry O’ Brien

Denise 02/07/86 – 31/01/08
Edward’s Syndrome

Denise celebrating her 21st birthday

Living with Dolly

At the AGM in Portlaoise, 2003 I spoke of life with my sister Dolly who had Edward’s Syndrome and whose being had changed our lives forever, this is a shortened version of that story………………..

I’ve always loved Christmas, but 1985 was extra special, I was 9 and my sister Eunice was 11. Mam and Dad (Mary and Derry) had a big surprise for us…….We would have a new brother or sister joining the family next July. We were ecstatic.

From the early stages Mam suspected something was wrong and doctors were quick to confirm this. We never thought anything of the very frequent check ups……not that we minded, it meant another trip to Drogheda for us and maybe a trip to Bettystown. On 2nd July 1986 Denise Mary O’ Brien entered the world by Caesarian Section weighing just 4 lbs 5 ounces. We raced round the roads telling everyone about our new sister. After a few days we were allowed to visit this little scrap of life lying in a glass box, with a tube in her nose. So this was her!!…….Then we were told that she was different, she would never walk, go to school……Why????

Whilst walking on the beach Daddy had to be blunt and told us the truth – Denise might not live very long…..She might never see home, Teddy the dog…..we were devastated. After 5 months, Denise or Dolly as she was christened by Uncle Jack was allowed home on 2nd December. Home would never be the same again.

Mam and Dad took turns to sleep on the couch beside Dolly’s cot in case she budged. And she did!!!. Mam and Dad were constantly exhausted. As her first Christmas approached I prayed for God to keep her alive so Santy could come to her at least once. It was a Christmas I still cherish. In February 1987 Dolly got her first bout of pneumonia and was gravely ill for 3 weeks. She was confirmed on admission to Hospital but miraculously survived. Against all the odds Dolly came home again and “normal home life resumed”.

By her first birthday she had bloomed into an adorable living porcelain doll. Her first birthday was a huge celebration. All my friends treated Dolly like a real person and they talked to her as if she could understand them. She made us a very close group of friends. Every time we met they would always ask “how is Dolly?”. Some close family friends firmly believe that Dolly brought the best out in all the lads and kept us out of harm’s way in our teenage years. Dolly’s health was always foremost in our minds. As she grew bigger the main problems were persistent kidney problems etc. She had been in Lourdes three or four times which was wonderful for Mammy and Daddy to visit this special place with their special daughter. The first time to Lourdes was Daddy’s first time to fly. That wouldn’t have happened without Dolly.

One hot summer’s day a friend, Roy, and I landed home for lunch. A woman from Limerick was in Mam’s and she had a child like Dolly but a little older. The likeness was uncanny and I definitely reckon they were communicating through touch and noises. This woman was Kay Fagan with her daughter Elaine. Kay and her husband Michael introduced Mammy and Daddy to S.O.F.T. Ireland. Soon families like the Fagans, Boylans and Matthews and many more became household names. It was fantastic for Mam and Dad. Dolly was my mascot and I carried her holy medals and her picture with me through the hardest days of school and college exams. I often wondered what would she be like as a regular seventeen year old but without Dolly as she was life would never have been the same. I never wished she was a regular teenager despite all her sickness and complications through the years.

When I met Jackie five years ago we found we had a common bond. Both of us had sisters with special needs. Jackie’s sister Olivia has Spina Bifida and is in a wheelchair. From the minute Jackie met Dolly I knew she had accepted her for the little person she was. She had the same caring side to her personality that Dolly had given me, a caring side that can only be fully recognised by a person with the less fortunate sibling. I used to get mad if I saw someone staring at Dolly but I know that some people without the experience of someone with special needs are going to stare and it can actually be quite amusing to see the look on their faces. I was so proud of Dolly. She had to fight for her life and had the heart of a lion. She helped me through last summers’ marathon cycle from Malin head to Mizen head. When every sinew in my body ached she inspired me to fight the pain as she had done so many times.
I feel that Dolly has made saints out of Mammy and Daddy. They have such strength and courage. I am very proud of how my family adopted to life with Dolly. It was an ongoing challenge which I was privileged to be part of. I believe the strength we drew from Dolly will get us through anything that life will throw at us.
Dolly is Dolly, always was, always will be. She has changed our lives for the better.
It is an honour to be her brother.

Dolly celebrated her 21st on 14th July 2007. Celebrations kicked off with a Mass in the home of Mary and Derry O’ Brien. It was celebrated by Fr. Richard Goode and was attended by over 140 people. There was a meal in Dunderry Lodge and it was a fantastic and fitting tribute to such a special lady. The party continued back at the house until the wee small hours of the morning. Jackie and I composed a song for Dolly’s 21st entitled “Dolly”, which was performed during her Mass. This song sums up Dolly’s life and what she meant to us.

scores<br />Thank you Dolly, you are our queen, our ray of sun scores<br />

Verse 1
Twenty-one years have come to pass,
My doesn’t life go by so fast.
And on the very day that you were born,
We were told you might never see the morn.

Thank you Dolly you are the one,
You are our queen, our ray of sun.
And the love you bestow, you speak with your eyes,
Deeper than the oceans, bluer than the skies.

Verse 2
But the morn did come and many more,
You defied the odds and many so sure.
And now as we celebrate your twenty-first,
We remember the better days not the worst.

Verse 3
And we marvel at your journey through life,
Despite all the hurdles, hardship and strife.
And the virtual mountain everyday that you climb,
Has shown us your courage time after time.

Verse 4
You’ve a heart of gold it’s plain as can be,
And you’re an inspiration for all who see.
You’re one of life’s miracles that is so true,
You’ve enriched all our lives by being you.

Lots of love,
Ian & Jackie

In January 2008 Dolly was admitted to the Lourdes Hospital, Drogheda with a chest infection. Her condition deteriorated over 12 days and she slipped away on Thursday 31 January with Mam and I beside her. It was just so so upsetting to stand and feel the warmth drain from her little body.
Dolly reposed at home for 4 days and the amount of people who called to our house to see her was unreal.
Dolly’s funeral Mass was simply “perfect” if that’s possible. The readings, songs and poems were all specially chosen and written for Dolly. The church was overflowing with well wishers. Dolly even got a “guard of honour “ to her place of rest.
We released two white doves at the graveside and watched them disappear into the great beyond……..I imagined them to be Dolly’s spirit.
“Goodbye Dolly”, I thought and I blew her a kiss. “Safe Journey Home”
Life without Dolly has been very hard. For such a little person to make such an impact on people’s lives it’s unbelievable. People have been fantastic and this has eased the burden. Thanks to one and all, your caring words and kind gestures have not gone unnoticed. We will be forever in your debt.
We miss you so much Dolly and you will be forever in our thoughts.

Ian O’ Brien