Zoya's story

“Zoya was born at 23 weeks old. All of Zoya’s conditions come from her being so extremely premature and being such a low birth weight – she was born at 450g, so she was really, really small. The whole first year of her life was spent in hospital.

“When she was born, she was intubated and ventilated, and for a long time she couldn’t be taken off the oxygen support. At one point, her lungs collapsed and the doctors told me she wasn’t going to make it. But she was still trying, so I wasn’t going to give up on her. I looked at this child and I saw someone so full of life, smiling, playing with toys. I wasn’t calling it quits.

“So I sought a second opinion and they finally agreed to let Zoya have another course of steroids. That really helped her and she was able to be taken off the oxygen, and that’s when they offered a tracheostomy. Since then, she’s just been on the up. She’s so determined!

“She can’t walk yet but she bum-shuffles everywhere – she’s three now and she’s doing so well! Even though she can’t walk, she’s still so independent. She’s non-verbal but she’s very, very expressive – she’ll tell you, or even shout at you! She’s got global development delay and cerebral palsy, and she has retinopathy of prematurity, so her retina hasn’t formed properly which impacts her eyesight.”

Once Zoya was well enough to come home, Tahira needed some support to make the most of their new life together. At Demelza, she found community and understanding.

“When we finally came out of hospital, my husband had returned to work and I was so lonely – I felt stuck all the time. I couldn’t just take Zoya to a children’s centre and meet other mums. But going to the Little Dots sessions at Demelza was the best thing ever. I met lovely parents there – I think I learned more from the other parents than I have from doctors and nurses!

“When you meet other medical mums, they don’t ask you things like how long you were in hospital – every other person is always so shocked and wants to talk about it, but with medical mums, they don’t care – it’s just our normal! It’s so comforting. Just normal conversations, being able to laugh at normal things, that’s what really helped.

“I’ve got my mum and my sister and they’re so helpful, but because of Zoya’s needs I can’t just leave Zoya with them. It took me two years to build up the courage to let Zoya go for day care at Demelza, but it’s amazing. As soon as you arrive they greet you, they greet your child, they don’t care that she’s got tubes stuck to her neck and her belly, it’s just normal. Every single person has a big smile on their face and they’re not just thinking about Zoya, they’re thinking about me as well. They’ll just give you the warmest hug and tell you everything’s OK.

“Sometimes as a mum you wonder what would happen if I’m not there – who’s going to look after her the way I can? Now, there isn’t anywhere else I would leave Zoya.”

At Demelza, Zoya is able to have fun and explore without restriction, developing new skills and finding ways to express herself.

“Zoya absolutely loves coming in for day care. I try my best to do crafty things with Zoya, but I have to clean it all up - the fun thing about Demelza is we don’t have to worry about cleaning up! One of the HCAs is really creative and they’re always doing crafts together. Because Zoya is non-verbal it’s a way for her to be expressive and she loves painting – she really gets involved. 

“Zoya can paint now, but when she was younger, her limbs weren’t as mobile. When your child has a complex condition you don’t really think about whether they can paint, you’re just focused on whether they’re going to survive, but her artwork makes me so amazed. The HCA helped her use her hands to explore the paint, and at the end of it we got this beautiful picture. It was her first piece of artwork and I’ve kept it ever since.

“She also did music therapy. I was worried at first that she would get scared, because she’s quite sensitive to noise, but the music therapist knew exactly how to work with her. They told me kids use music to express themselves, that it’s a form of communication. As a mother of a child that’s non-verbal, if she can talk to me through music that’s just amazing.”

Getting out and about isn’t always easy when your child has a complex condition, but Zoya and her family have loved attending Demelza’s family events, knowing they are with safe with people that understand Zoya’s needs.

“We go to events too, and the Christmas trail at Demelza was the best thing ever. It was amazing – the thought that went into it, the nurses made such an effort, they did a walk-through trail, they had a photo booth, little crafts, food, actual real reindeer! It was so nice to be with other families like us and people that Zoya knows. It was the absolute highlight of our Christmas.”

Since coming to Demelza, Zoya’s family have been able to make amazing memories with her and Zoya’s confidence and abilities have flourished. But it’s not only Zoya who has grown. 

“Demelza has helped us with so much. The artwork, day care, Christmas events – these are normal things you want to do with your child but you never get the chance, or you don’t feel as comfortable doing when your child has a complex condition. These experiences have been the best thing for us. 

“Meeting other mums has been amazing too – I remember when I first started going, I was the one seeking advice, but last time I was there another parent was asking me questions, so it was nice to be able to give that back. We’ve evolved so much since being part of Demelza.”