Burnley mum inspired by courage of her blind daughter (two) to run London Landmark's half marathon for Guide Dogs UK
It was a mother’s instinct that told Alexandra Mulrooney there was something very wrong with her baby.
Overnight, five month old Ivy seemed to go from being happy and lively to lethargic and off her food. Alexandra said: “Up to that point Ivy was a normal, happy little baby. I just knew something was seriously wrong.”
After being sent home twice from A and E, Alexandra took matters into her own hands when her daughter’s condition failed to improve. She rang 111 and was told to take Ivy straight to the Royal Blackburn Infirmary. Ivy was placed on a drip and tests revealed she had an enlarged heart and she was referred to Alder Hey Children’s Hospital in Liverpool. Alexandra, who is an education mental health practitioner in the East Lancs mental health support team, said: “They managed to stabilise Ivy but we still had a very poorly little girl.”
Further tests revealed that Ivy had dilated cardiomyopathy, a condition that affects the heart's main pumping chamber, the left ventricle which enlarges and weakens, making it harder to pump blood effectively. This can lead to heart failure, where the heart can't pump enough blood to meet the body's needs.
In the last few months Ivy has also been diagnosed with nystagmus, severe photophobia, a condition which creates extreme sensitivity to light which makes it very difficult for Ivy to be outside. Ivy also has cone rod dystrophy, an eye disorder that causes progressive vision loss due to the degeneration of cone and rod photoreceptor cells in the retina.
Now two, Ivy is registered as severely sight impaired which means she is legally blind. She is also being tested for Alström Syndrome, a rare, inherited genetic disorder that affects multiple systems in the body. It's characterized by progressive vision and hearing loss, among other things, which makes it difficult to diagnose.
The Mulrooney family’s situation mirrors a current storyline in TV soap Eastenders where young mum Lauren Branning’s newborn son Jimmy is diagnosed with severe sight impairment. The storyline not only explores the challenges faced by the family, it also highlights the importance of a mother’s instinct to seek medical help when her gut tells her something is wrong with her child.
As Alexandra and her husband Tom, who is head of e-commerce at Vision Linens in Blackburn, navigate life with their daughter’s condition they’ve turned to organisations that can help them nurture Ivy and help her progress and develop.
Alexandra said: “We’ve received so much advice and guidance from both the RNIB and Guide Dogs UK on how we can help Ivy to grow and develop with her condition and be like any other little girl.”
Describing her daughter as an ‘extraordinary little girl’ Alexandra said that Ivy had been offered a cane but she steadfastly refuses to use it adding: “She was having none of it. Ivy is sassy and feisty, she wants to do things her way. We are amazed at her resilience.
“She loves exploring books and even though she can’t see the words, she enjoys feeling different textures in “touchy feely” books and she tries really hard to identify colours, shapes and pictures. We rent tactile books from “Living Paintings” which is a free charity library.
“She also loves music and dances whenever she hears it.”
In a bid to raise awareness and also funds for the charities that have helped their family, including their little boy Noah who is six, Alexandra plans to run the London Landmarks half marathon next year to raise money for Guide Dogs UK. She has also signed up for the Blackpool Music Run 5k on July 13th and Blackpool Run the Lights 10k on August 16th.
Alexandra said: “We’ve seen first-hand how vital early support and accessibility are for children like Ivy. That’s why I’m taking on this challenge, not just to raise money, but to raise awareness and pave the way for a brighter, more inclusive future for kids with vision impairments, and especially our Ivy.”
And it certainly is a challenge for Alexandra, considering she is a novice runner. Once she started training she loved it and now running is one of her favourite parts of the week. Alongside that Ivy’s nursery, Oaks From Acorns in Burnley, are hosting a ‘Wear It Yellow Day’ to raise money.
Praising the nursery for its support Alexandra said Ivy loved attending and was known as ‘Diva Ivy’ as she is such a strong willed little girl. Alexandra also thanked her parents, Paul and Julie and her sister, Vic, for their help and support, adding: “I don’t know where we would be without them, they have been so supportive and there for us, without fail.”
If you would like to donate to Alexandra’s fund raising please click HERE.