Dealing with Down Syndrome

Dealing with Down Syndrome
Jonathan McNabb

Reporter:

Jonathan McNabb

Email:

jonathan.mcnabb@thechronicle.uk.com

A NORTH Antrim mother is trying to change outdated perceptions regarding a Down Syndrome diagnosis.

New mums often don't hear congratulations and Clare Cushenan is trying to change this.

Clare has dropped baskets off at every maternity unit in Northern Ireland, including the Causeway Hospital in Coleraine.

Speaking to The Chronicle, Clare, from Ballymena, explains that she started the initiative after the birth of her daughter Aoife.

“I started Special Delivery NI last year and launched on World Down Syndrome Day this year (March 21),” she said.

“It is on the 21st of March because Down Syndrome is an extra copy (third) of chromosome 21.

“I am currently waiting to be called forward by the Charity Commission NI to be granted Charity status.

“I started Special Delivery NI because of my daughter Aoife, who is now seven-years-old.

DIAGNOSIS

“We were given her Down Syndrome diagnosis at birth. I was shocked and didn’t know what life with a child who was ‘different’ would be like.

“How would this affect my family? Would she be able to go to school with her older brother and sister? How would we cope with this?

“I was handed lots of leaflets on Down syndrome and all the health concerns people with Down Syndrome might face. It appeared to have her life mapped out.

“It was overwhelming and unfortunately mainly negative, slanted towards the worst case scenario.

“The midwives though very kind didn’t alleviate any of my fears, but how could they, they had no frame of reference, just a memory of the last woman who had a baby with Down syndrome and left with the myriad of leaflets.”

With this is mind, Clare decided to come up with her own ways to support families and remind them how fortunate they are.

“I don’t want another mother and family who have a baby with Down syndrome to leave hospital feeling as I did,” she continued. “I want them to hear congratulations your baby is perfect, because they are.

“All our worries and concern about Aoife’s future were unfounded. We have a typical family life. Yes, Aoife takes longer to achieve her developmental milestones but she does achieve them. She has taught us all about patience and determination.

INFORMATION

“The gift baskets contain positive information about Down Syndrome. There is A ‘Wouldn’t Change A Thing’ book which seeks to portray the true stories of positive, lived experience typical of the majority of real people with Down syndrome and their families.

“Furthermore, there is a letter from me congratulating the new mum and basically saying it is overwhelming but it will be fine, actually better than fine, it will be amazing, with items for both the baby and mum.”

Clare insists she needs help to continue with her high levels of generosity in the coming months ahead.

“As of last week I have left free gift baskets in every maternity unit in Northern Ireland, so every baby born with Down Syndrome from now on should receive a gift basket - but I need help to continue,” she concluded.

“I need help from shops and retailers and individuals, financially I have a GoFundMe on my Facebook page and also through donating items suitable for the gift baskets.

“Items include 0 - 3 month old baby grows/baby clothes, soft cuddly toys suitable for newborns, baby blankets, toiletries for baby e.g. baby wash, shampoo, lotion, nappy cream etc, toiletries for mum e.g. bath soak, shower gel, moisturiser etc, books e.g. 'Guess How Much I Love You', scented candles, gift vouchers, hand knitted/crocheted blankets, cardigans etc, and anything else suitable for a gift basket.

“I appreciate monetary donations, no matter how small, from individuals and would welcome any companies or manufacturers getting in touch.”

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