"When Andy visits, it really takes the pressure off..."
When Aqsa was born, her parents Ikhlaq and Ayesha were told that she had a rare bone condition (hypophosphatasia), and she was only the second child to be born with it in the UK. Ikhlaq and Ayesha wanted to hold their little girl when she was born, but they couldn’t for several months; she was too fragile. Once, during her time in hospital, she kicked the side of her cot and fractured her leg. She was moved between hospitals, from Birmingham to Bristol, and they were even working with specialists in America to find the right treatment to support her health and help her thrive.
Now two years old, Aqsa has been home with her family for five months. Ikhlaq and Ayesha have had to learn so much – how to clean and care for Aqsa’s trachea, how to use a ventilator, and managing her three injections a week. While they can see how much these treatments help her, watching her scream in pain is agonising. This is where the support of Jessie May has been invaluable to the family. Because the nurses are medically trained to meet Aqsa’s complex needs, they are the only people Ikhlaq and Ayesha feel comfortable leaving her with.
Aqsa’s needs mean that the family rarely leaves the house, or they only go out for a few hours at a time because of the battery life of her ventilator. But when nurse Andy is with her, they get the chance to step out – whether it’s a quick trip to the shops or a few moments for themselves. Even small moments like this mean the world to Ikhlaq and Ayesha, giving them the support they need to continue caring for Aqsa every day.
Ikhlaq says, “When Andy visits, it really takes the pressure off. The whole family feels at ease, and we’re able to spend quality time together, including with our two other daughters. Just the other day, we called Andy in a rush for an urgent appointment, and he was there in a heartbeat. It’s such a comfort knowing we can rely on him and trust him with Aqsa. She always warms to him quickly, and they communicate using sign language. Now, Andy knows exactly what she needs.”
Aqsa’s journey has been nothing short of challenging, but with the support of Jessie May, Ikhlaq and Ayesha are able to care for their daughter with the peace of mind that they’re not alone. The incredible team of nurses, like Andy, offer more than just medical care – they provide the emotional support and expertise that gives families like Aqsa’s the strength to face each day.
If you’d like to know how you can support families like Aqsa’s, find more information here – Support us | Jessie May.
Your generosity, no matter how small, can make a lasting difference, providing vital respite for families and ensuring that children with life-limiting conditions get the exceptional care they deserve.