World Down Syndrome Day: Rhona & Molly’s Story

World Down Syndrome Day is taking place this Sunday, March 21st and to celebrate, Rhona Cullinan (aka @MollyandJoshua), took over the Family Friendly HQ Instagram stories for the day.

Rhona has three children with special needs, Jamie who is 16 years old with Aspergers, Joshua who is 6 years old with Autism, and Molly who is 4 years old and has Down syndrome.

Rhona describes Molly as her little princess who is "4 going on 14". She opened her stories by saying, “This is an extremely special week for us as special needs mums and for anyone who has a child with Down syndrome, as the 21st of March is World Down Syndrome Day.”

For her takeover, Rhona told us all about Molly and their journey from the start to now. She reflected back on how they found out about her diagnosis and what life is like with a child with Down syndrome. You can watch the full takeover on our Instagram page.

The Beginning...

When Joshua was a year old, Rhona and her partner decided to try for another child. They got pregnant very quickly but because Rhona had gestational diabetes on both her previous pregnancies, she was brought in at 9 weeks for tests and a scan. During the scan, the nurse left to get someone for a second opinion and Rhona said she knew at that point something was wrong.

The consultant explained there was a problem with the baby’s heart but didn’t know what it was yet. Rhona was booked in for the cardiologist to look at it the next day. After a tough night of waiting, Rhona met the cardiologist who she said was so comforting and down to earth to talk to. He explained the baby had a condition called Tetralogy of Fallot, which is 4 defects of the heart. The baby would need major surgery and could be born with Down syndrome.

Rhona said she never thought in a million years this would happen to them. But due to the heart condition, Rhona said they focused more on this than the possibility of the baby having Down syndrome. The couple had told friends and family they were pregnant but decided to keep other news to themselves until they had a clearer picture of what was going on.

It’s a Girl…

During a scan at 16 weeks, the couple was asked by the consultant if they wanted to know if the baby has Down syndrome. Due to the risks of the tests, Rhona and her partner decided not to find out but all Rhona wanted to know was if it was a boy or girl. Being a makeup artist she longed for a little girl to pass down her makeup genes to and found out that day that it was a girl. She was so overjoyed with emotion the consultant thought she was crying about the heart news but she said they were tears of joy at the news it was a girl.

Rhona describes herself as an extremely positive person and decided at that time to just make the best of it and go with the attitude that the baby is going to be fine. They would get through it one day at a time and deal with whatever was to come.

Welcome Baby Molly…

Molly was born at 39 weeks by emergency C-section and Rhona said there was about 100 people waiting for her including a heart team, a Down syndrome team, and a diabetic team.

She spent the first 3 days in ICU, then Molly was released to the special unit and from there into the normal ward where they were let go home. Rhona explained Molly was a really good baby, rarely cried, “Molly was just gorgeous, she was just so cute.”  

When Rhona got home she started to look up more about Down syndrome. She watched documentaries, joined Facebook groups and communities and learnt about the life and achievements Molly could have. She decided then and there she would never limit any of her children. She would let them be who they wanted to be and they could do anything they wanted as long as they wanted to do it.

Molly started occupational, physio, and speech therapy at a young age. She uses the sign language Lámh to communicate, which is basic one-word signs. Now at age 4, she has a few words but she still signs. She had her first heart surgery at 6 months old, however it was unsuccessful and Molly ended up in hospital for 6 weeks but Rhona said, “She was so strong and resilient and literally bounced back within a week of getting out of hospital.”

After gathering millions of photos of Molly, Rhona decided to set up a page about her journey. The page grew rapidly, gaining nearly 1,000 followers in one day and within weeks they were in the news and on the telly. Brands started to contact Rhona then about having Molly as an ambassador and her little princess quickly became a star and model.

You can watch the full takeover on our Instagram page.

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