Girl with a one-in-a-million condition has skull rearranged like jigsaw
A young girl has been given the chance of a normal life after medics rearranged the bones in her skull "like a jigsaw puzzle".
Brave Josephine "Josie" Grace Owen has a one-in-a-million condition which means she has deformed skull plates, and her facial bones did not grow in proportion, giving her a characteristic appearance. Josephine also suffers from Craniosynostosis, which caused the bones in her skull to fuse together too quickly before it was fully formed. And as she grew, her skull became more out of shape over time.
The three-year-old from Tennessee in the US has a rare musculoskeletal condition called Antley Bixler Syndrome (ABS), which only 30 patients worldwide have ever been diagnosed with. The estimated prevalence for the condition is less than one in 1,000,000.
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Josie's skull was 'rearranged like a jigsaw puzzle' to help her survive (Mediadrumimages/Anna Grace Owen)
The family on vacation (Mediadrumimages/Anna Grace Owen)The two conditions, which have required £3.1 million ($4m) of treatments, have left Josie very vulnerable, and she needs to be looked after around the clock by parents, content creator Anna Grace Own, 37, and 42-year-old dad Nathan Owen, who is a financial advisor.
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Anna said: "Even before Josie’s birth, we knew there were some issues, but we didn’t know exactly what they were. After she was born, on May 29, 2020, Josie was put in a Neonatal Intensive Care Unit (NICU) for 62 days and received three major surgeries to save her life.
“The latest surgery that Josie had was in June 2023 and it was extremely extensive. Her forehead, the frontal bone, was removed, re-arranged and placed back in her head. In the X-ray, her skull almost looks like a jigsaw puzzle that has been taped together."
Josie in hospital with Anna (Mediadrumimages/Anna Grace Owen)Anna said that surgeons inserted dissolvable screws to keep her forehead together and that her bones will eventually grow to become one mostly solid piece during the next couple of years. But the costs have been prohibitive.
She added: "The bill we received for this surgery, including hospital stays and medicines, was for $50K (around £40K). The medical bills she accrued were so high that if it hadn’t been for state insurance, we would have been bankrupt before we even got her home from the NICU. From May 29, when she was born, to December 31, 2020, her medical bills stood at over four million. If it hadn’t been for state insurance covering us, we would have been penniless."
The X-ray of Josie's skull looks like a jigsaw puzzle (Mediadrumimages/Anna Grace Owen)However, despite having to go through so much at such an early age, Josie is showing herself to be a loving child and Anna continued: "Josie is a very loving, empathetic kid. If any of her siblings get hurt, she goes to them, hugs them, and showers them with her love. She is also a very fun-loving child. She's so funny and silly and loves to play with her siblings. We started learning sign language with her, and now she is able to communicate with us with much more fluency and express her needs and desires."
Because Josie was born disabled, her family qualifies for state-run health insurance, which covers most of her medical bills, because the family say their private health insurance are refusing to pay. Anna said: "We have private insurance, too, but they pay for absolutely nothing. We get letters all the time that they have rejected our insurance claims because they say that her surgeries are not medically necessary."
Josie's condition is one-in-a-million (Mediadrumimages/Anna Grace Owen)
Josie with her mum (Mediadrumimages/Anna Grace Owen)Children with ABS also have choanal atresia, a condition where one or both nasal passages are blocked by bone or tissue. In Josie’s case, both are blocked, and she needs a tracheostomy tube or artificial trachea inserted in her windpipe all the time to assist in breathing. Her legs also have restricted movement because of deformed feet, which makes her prone to tumbling and injuring herself, which is very dangerous, Anna explained, because even a single fall could kill her due to the fragile nature of her skull.
Josie is the youngest of four siblings and everyone does their part to keep her safe but because they live in Tennessee, they often have to deal with tornadoes during spring and take shelter in their house. They have to prep their bathroom, where they generally crowd in with emergency supplies and medical equipment.
Brave little Josie adores her family and is very loving despite all her troubles (Mediadrumimages/Anna Grace Owen)
Josie on a happy day out (Mediadrumimages/Anna Grace Owen)Anna added: "We have a special tornado bag for Josie, with all her essential medical needs, including a brand new artificial trachea, gastro tube, and a mini oxygen canister. We also have a battery generator in case of a blackout. We have enough generators around to do what we need to do in an emergency.
"Josie will undergo at least a dozen major surgeries in her lifetime to lead a semblance of a normal life, but I still hope that one day she becomes independent, have kids of her own and enjoy the joys that life has to offer."
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