10 October 2023 , 10:29
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Parents of a little girl named Hattie Bull noticed her eyes flickering, which led to a devastating diagnosis. Hattie was also pale and unsettled, her father Peter shared with BlackCountryLive.
Hattie's mother Vicki, from Wolverhampton, took her to the GP when she was six-weeks old and she was referred for further tests. However, as Hattie approached three months of age, Vicki noticed a decline in her health and rushed her to Birmingham Children's Hospital. There, they received the news that their daughter had a rare form of osteopetrosis, a condition that affects just one in 250,000 babies.
Tragically, the disease has caused seven-month-old Hattie to lose her sight. However, thanks to a stem cell transplant, there is hope that Hattie will be able to live a relatively normal life despite her blindness.
Without the treatment, Hattie's lifespan would have been significantly reduced, potentially only living between two and ten years. Speaking about his daughter's health, Peter, aged 36, said: "When she was about six weeks old we started to have concerns about her sight and her eyes were flickering and she was quite pale so we were concerned about that as well."
Hattie was initially taken to her GP and referred for further tests. However, as they awaited appointments, her parents' concerns escalated, leading them to take her to the hospital. "She was unsettled a lot and crying," Peter shared. "So Vicki took her to Birmingham Children's Hospital and they took some bloods and said it was something serious. We were then escalated very quickly."
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Following this, Hattie was diagnosed with a rare form of osteopetrosis. She is currently in an isolation ward at Birmingham Children's Hospital, undergoing a stem cell transplant.
Peter, Vicki and their eight year old son Henry were tested for compatibility but unfortunately, they were not a match. Instead, an anonymous donor from America has stepped forward to provide the life-saving stem cells.
The donor was found through the international bone marrow centre DKMS. Without this transplant - the only known cure for her condition - Hattie would have faced a shortened lifespan and lived in pain. Peter, who is employed by a plastics company, added: "She will require a lot of care during that time."
"Regrettably, the disease has already claimed her sight, which cannot be restored. But if all goes well, she will just be blind and the disease will be eradicated, allowing her to lead a normal life."
"She's been through a lot and has good days and bad days. But she's very resilient and just gets on with it, if she's awake and wants to have a little play then she will. If she was older and knew what was going on then she might dwell on it more, but because she's so young she just gets on with it."
Surgeons fitted a shunt into her brain during an operation in September following a build up of fluid. But she is a "little soldier" who takes all of her treatments in her stride. The family of four have been living apart during Hattie's isolation, but Peter hopes that big brother Henry will be able to play with Hattie again soon.
"We haven't been together as a foursome for over five weeks and we can't until her blood levels reach a certain level and she has some immunity," he said. "Once she's got that, Henry will be allowed on the ward and we'll have some family time."
A GoFundMe page has been set up to support the family. Peter added: "It's just a bit of support and it's one less worry for us in the back of our heads."
Hattie's big brother Henry is raising money for Birmingham Children's Hospital. You can visit his fundraising page here. For more information on DKMS and how you can sign up to be a donor, click here. To view Hattie's GoFundMe page, click here.
* An AI tool was used to add an extra layer to the editing process for this story. You can report any errors to [email protected]
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