Sophia is an eleven-month-old little girl from Donaghadee, she has the most beautiful eyes and her smile can light up any room. But Sophia has had a lot more challenges than other little girls her age. Sophia has several conditions that mean she requires 24/7 care.
That care is provided by Sophia’s mum Leah, and dad Alex, who describe her smile as infectious and tell us that she has the whole family wrapped around her little finger, even at such a young age.
Sophia has two brothers, big brother Kai who is six years old and big big brother Carter who has just turned nine. Leah and Alex had a chat with us recently to tell us about our Little Star Sophia and their family’s experience with Children’s Hospice.
"We have been coming to Hospice since Sophia was 3 months. The staff there know Sophia as much as we do, we have all been getting to know Sophia together. Every staff member we have met in each stage has been an absolute godsend, it actually makes us so emotional to talk about it, but it’s only because of Hospice that we have Sophia at home today".
"When we come to Children’s Hospice now, Sophia loves to spend time in the sensory room, it’s a real visceral experience for her. She also loves the music therapy and can get involved with the tambourine on her feet, normal things a baby her age should be enjoying".
"Our boys also love it at Hospice. They get to make memories with their baby sister and be her big brother and big big brother! They do whatever they can to make her smile and like most boys their age they love to show off to their baby sister".
"Grace, the Head of Children’s Hospice, fought for Sophia to get home, she advocated for us to be able to come to Hospice for step down care. We had never spent more than one night outside of Hospital with Sophia but at Hospice they taught us to care for her, they built up our
confidence and for the first time we felt like we could be parents to her".
“In hospital, we felt like we couldn’t parent Sophia, we needed to ask for help from the doctors or nurses for something as simple as lifting her for a cuddle. It was a logistical nightmare too because of all the equipment".
“Sophia has been through so much in the past 11 months but she continues to be such a positive and fun little girl. We know that going forward she will keep pushing through and we feel comforted knowing
that we have the Hospice by our side to help us every step of the way".
“I hope that you and your families have a wonderful Christmas and that you are able to give Hospice a gift that will help them to help other families like ours in the new year!“