If a smile is worth a thousand words, then little Emilia Perrozzi sure has a lot to say. Almost seventeen months from the day she was born on March 1, 2016, weighing just 510 grams (less than a bag of sugar), Emilia has survived numerous respiratory arrests, procedures, surgeries and diagnoses, to finally come home to join her twin brother Eli and the rest of their siblings. And this little fighter just keeps on smiling through it all.
Over the past 17 months, Emilia has undergone open heart surgery twice to close holes in her heart, as well as an operation to widen her trachea and drop her voicebox to help her breathe.
She has oral aversion, which is why she is still being peg fed through her tummy. She has chronic lung disease and will be on oxygen to help her lungs function normally for at least 12 months. She also has fatty liver disease and high blood pressure and has to take 15 different types of medications daily.
Most recently, Emilia’s family has been told that she has suffered white brain matter damage, which has since led to a diagnosis of Diplegic Cerebral Palsy. Leg muscles in particular with this type of Cerebral Palsy tend to be extremely tight, which over time causes joints to stiffen, reducing the range of motion. Emilia’s parents have been told she will not walk unaided and may need a wheelchair.
“We’ve had so many close calls,” says mum Jessica “when she was four months old, she kept going into respiratory arrest and taking longer and longer to come back and recover from each one… At one stage, the hospital staff had ‘the conversation’ with me. They told me I’d have to consider her quality of life. I said ‘you give me one more day with her and I’ll take it, no matter what’. It was never mentioned again.
“Emilia and Eli were both so small and fragile when born at 28 weeks, we didn’t know if either of them were going to survive those first 48 hours. Eli was bigger at 1300 grams, but still tiny and transparent.”
Once he reached 4.5lbs and could breathe on his own, Eli was allowed home in April 2016, six weeks before his due date. After a few months in the Neonatal in CUMH, Emilia was transferred to Our Lady’s Children’s Hospital, Crumlin in Dublin.
For over a year, the Ronald McDonald House – which provides accommodation and a caring and supportive environment for families whose children are seriously ill and are hospitalised or undergoing medical treatment at Our Lady’s Children’s Hospital – became a second home to the Perrozzi family.
Jessica would drive down to Clonakilty on a Sunday and travel back up to Dublin with her husband Johnny on Monday, who would stay until Thursday. Jessica’s mum Theresa would then travel up with the rest of the children and Johnny would return to Clonakilty to work. The children stayed up every weekend.
“For the first couple of weeks we were in parent accommodation and children were not allowed to stay, so that was very hard,” says Jessica. “My auntie Ann had Eli and Ivan and Callum were with my mam. I felt I was missing out on the kids. Ivan was still only one-and-a-half; he missed me and I missed him. And I felt I wasn’t bonding with Eli. It was very hard for Callum as well, who was old enough at 10 to know what was happening. It broke his heart because he knew she was very sick.”
Now weighing 7.7kg, Emilia is finally home and happy in the three-bedroom house she shares in Clonakilty with her mum and dad and three brothers. Although life is hectic and Emilia still has a long way to go, “we’ll deal with anything”, says mum Jessica. “she’ll always be behind Eli, but we don’t mind that.”
Jessica’s mum Theresa comes over every morning and helps out with the children all day. Johnny is self-employed so he manages to juggle looking after the business with doing the shopping and getting the dinner ready.
“She has a tendancy to vomit so someone always has to be with her all the time in case she aspirates and has to be suctioned,” says Jessica.
The HSE provide a nurse for Emilia three nights a week and The Jack & Jill Children’s Foundation provides overnight care two nights in the month, but for the rest of the time, Jessica and the two smallest children sleep in the sitting room with Emilia.
“Emotionally and financially it’s been very difficult, but it’s lovely being at home with her now,” says Jessica.
Emilia will require physiotherapy, occupational therapy and speech therapy for the foreseeable future. She also needs a lot of expensive equipment to help her walk.
‘That’s why we’re fundraising,” says Jessica. “We want to give her every opportunity to develop to her full potential. She’s clapping her hands now and so alert and happy. I want her to become everything that she can.
“We’re so grateful for the support we have already received, we can’t thank the local community enough.”
A duck race in aid of baby Emilia will take place on Saturday, August 5 at 5.30pm in Clonakilty, followed by a raffle, BBQ, bouncy castle, face painting, music and lots of fun. In Clonakilty, ducks can be purchased at Casey’s and The Galley bar and Giovanni’s Take Away, Solus Therapies and O’Donovan’s off-licence and in Enniskeane, at The Village Inn.
Donations can also be made to baby Emilia at: AIB Bank, Pearse Street, Clonakilty. Sort 936057. A/C no 13897027.
You can follow Emilia’s progress on facebook: The Light of Hope for baby Emilia.