Support Emmett's Fight Against Ollier Disease

Help Emmett Rose

Update March 2025

Emmett has now been seen by an orthopedic surgeon at Shriners Childrens Hospital in Chicago IL. They are familiar with Olliers Disease and have a team who has done surgery on kids like Emmett.

Their first concern is addressing his right leg that has a 50 degree angle knock knee. They will preform a wedge Osteotomy to correct the angle and take all that pressure off that leg. It is 1 month of non weight bearing with a spica cast.

The doctor told us he has these lesions all over his body. His left side is more affected but it is on both sides. He also has it in his ribs and possible small spots on his spine. The next concern is his left Ulna has stopped growing but the radius is growing and bowing. But for now we will monitor it.

After this surgery he will most likely need to have a plate put in his right leg on the growth plate. This will stunt the growth of the right leg giving his left leg a chance to catch up and hopefully prevent the knock knee returning.

We are so thankfull for all the love, support and prayers.

Seeking Help for Emmett’s Medical Expenses

Dear friends, family, and kind-hearted supporters,

We are reaching out to you to seek help for our beloved Emmett Wade. Emmett is a joyful 2.5-year-old boy who was born with a rare bone disorder called Enchondromatosis, or Ollier Disease. This condition affects the cartilage, hindering proper bone development and causing his limbs to grow unevenly. Currently, Emmett’s left leg is 2 inches shorter than his right leg, and his right leg has developed a 45-degree knock knee. This not only prevents him from moving well but also causes him significant pain. Emmett limps when he walks and can no longer run, which is heartbreaking for such an active and curious child.

Emmett's Medical Journey

Shortly after birth, Emmett began seeing specialists in Michigan. However, due to the rarity of his condition, doctors were slow to diagnose it. We were advised to seek help out of state, leading us to Nemours Children’s Hospital in Delaware, a 10+ hour drive from home. After a 4-month wait, we were then directed to Duke Hospital in North Carolina, an 11-hour drive from home.

The Financial Burden

Despite having medical insurance, the costs of Emmett’s care are staggering and not fully covered. From doctors' bills and insurance co-pays to travel expenses, the financial burden has become overwhelming. Even with good insurance, out-of-pocket costs continue to escalate. We are seeking help to cover these expenses and services that are not covered by insurance.

How You Can Help

We are heartbroken but determined to move forward and help Emmett. We believe that moderate gifts from many can significantly improve his situation. Emmett’s needs will be ongoing and lifelong due to the nature of his condition, which will require many surgeries in the years to come. With your support, his future will be brighter.

Emmett's Spirit

Despite his challenges, Emmett is a joyful and determined child. He lights up our family with his resilience and happiness. He loves learning new things, playing, and chasing his older siblings. He never lets his condition get him down and adapts to find ways his body can move. Emmett’s pain tolerance is remarkable, given that it is all he has known. He enjoys sitting and reading books, often asking anyone nearby to read to him.

Emmett’s Story

At birth, Emmett had noticeable structural differences, primarily on the left side of his body. His left foot, leg, and rib cage had sharp angles and fleshier skin in spots. His fingers and toes also looked slightly different. Despite raising concerns with doctors, it took time to get a diagnosis. At 2 months old, Emmett was hospitalized with RSV and spent a week in the Pediatric Intensive Care Unit. This experience highlighted the worsening condition of his chest, leading to further investigations.

At 5 months old, Emmett's leg issues became more evident. X-rays revealed hip dysplasia and bone issues. After ruling out rickets, we were referred to the Genetics Department, which took over a year to provide answers. Finally, Emmett was diagnosed with Enchondromatosis, which affects most of the bones in his body.

Current Situation

Emmett’s right leg knock knee has worsened to a 45-50% angle, causing him to limp despite using a 2-inch shoe lift. We are now seeking care at Duke Hospital in North Carolina after facing delays and challenges with previous hospitals. Ollier disease causes deformities in the bones, and Emmett will likely need surgical interventions soon.

Our Request

We are looking for help to cover travel, stays, and medical costs for Emmett’s upcoming out-of-state appointments. Your contributions will help alleviate the financial burden and allow us to focus on getting the best care for Emmett.

With Gratitude

We thank you in advance for any support you can provide. All contributions will go directly to Emmett’s medical expenses not covered by insurance. Your generosity will make a significant difference in Emmett’s life and help him face his lifelong battle with Ollier disease.

With heartfelt gratitude from our entire family,

The Rose Family

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**Information about Ollier Disease:**

Ollier disease is a rare, sporadic, nonhereditary skeletal disorder characterized by the development of benign cartilaginous tumors (enchondromas) near the growth plate cartilage. This condition leads to limb asymmetry, shortening, and increased bone thickness. Symptoms typically appear in early childhood, with a mean diagnosis age of 13 years. While there is no treatment for the underlying condition, complications such as fractures, deformities, and malignancies can be managed through surgical procedures. The condition is estimated to affect 1 in 100,000 people.