Patient Stories

Remarkable Attitude and Fierce Determination Helps Teen From “Down Under” Beat the Odds

Hannah was ten years old when she was first diagnosed her with early onset Osteochondritis Dissecans (OCD), which is a condition that develops in joints, most often in children and adolescents. It occurs when a segment of bone begins to separate from its surrounding region due to a lack of blood supply.

Hannah resumed playing sports until early 2015, four years later, when she began to mention the ache in her knees had returned. After consulting her surgeon, the results came back showing that both of her knees were severely damaged by OCD. 

In May 2015, she underwent surgery on both of her knees and realignment surgery on both of her legs. Bone drilling was performed to increase new blood pathways to the affected areas and bone grafts and bone marrow transplants were inserted and fixated with screws and pins. Plates were inserted to realign her legs. Both legs were done at the same time, which required a wheelchair for six weeks while keeping both legs completely straight in leg splints. The recovery was difficult, slow and painful.

Eight months after the operation, she began some rehabilitation and her goal of playing sports again would finally be realized. Then the unthinkable happened. Three months after the screws and plates had been removed, a bone segment in her knee broke off.

Subsequently, the broken bone segment was reattached but ten months later it was found that it had not ossified and consequently her left leg was again collapsing inwards compressing this bone graft and preventing the blood supply from reaching it which, in turn, prevents the bone from hardening. Even though the scans showed her healing was progressing after this latest procedure, Hannah remained convinced something was not quite right.

After much research, many discussions and much advice, her specialist suggested an allograft used in the USA may be Hannah’s only hope of restored bone health in her left leg. However, allografts are currently unavailable in Australia and Australian surgeons had not performed this particular operation before. The other option was to travel to the US but it had its own set of challenges.

So began the lengthy process of searching for an American tissue donor company who would be prepared to ship the required tissue to Australia for Hannah. After speaking to JRF Ortho, her mom realized it would be near impossible to get a graft to Australia. After lots of time and effort, her mom was able to meet with the Minister of Health and received the approval to get the graft in Australia.

Hannah later received the news from JRF Ortho that she was now on top of the donor list. A potential donor had been identified, more than seven months after this international process had begun, and on the morning of Monday, September 17th, 2018, a transplant from the USA arrived in Melbourne. That afternoon, Hannah prepared for her eighth surgery. Hannah recovered well and returned home four days later, the day before her 17th birthday.

Her entire family remains so very grateful to our donor family. Donor families offer the possibility to change the ending to someone’s story but it would be several weeks before they would know how that ending might possibly look. Hannah’s mom reflected on the entire experience, “The difference donors make in people’s lives is absolutely incredible and we are but one family who has been given hope from a beautiful donor family on the other side of the world. We will never forget them and will be always grateful for their precious gift to us.

“If it wasn’t for the large team of people who were prepared to go beyond the normal boundaries of their job we may not have received this second chance. We are so grateful they (JRF Ortho) persisted on our behalf and were compassionate in our plea for assistance. It just goes to show that there are always pathways if one persists, even though those pathways may take longer and may be a little difficult at times; never give up on your dreams”.

Hannah and her family remain unsure of what the future holds for her troublesome legs but her entire family is quietly confident since the transplant and are hopeful that sport can feature in her future once again. What her mom is sure about is Hannah’s rich character; she is a strong and determined young lady. Her life these past three years has been far from easy but she has chosen to be positive and sought to be resilient in her ever changing and often difficult circumstances. Her story is powerful and there is no doubt Hannah will go on to achieve great things in her life.

Update:

In February 2019, five months post-transplant surgery, Hannah’s physical therapist remarked that Hannah’s legs were functionally the best she had ever been! This was the first time in nearly four years that Hannah was actually participating in something beyond PT exercises.