Girl Declared ‘Fine’ Now Struggles to Walk Without a Wheelchair

A Mother’s Heartbreak and the Struggle for Her Daughter’s Mobility

Faye Errington, a mother of three, has shared her heart-wrenching story about her 10-year-old daughter, Orla, who faces the possibility of losing her ability to walk. Orla has endured a lifetime of health complications since birth, including multiple medical conditions that have left her with severe mobility challenges.

Orla was born with three holes in her heart, two of which have closed, and a single kidney that has caused incontinence and frequent infections. She also has hip dysplasia, a condition where her hip socket is not fully formed. This has led to severe pain and difficulty walking, requiring regular respiratory physiotherapy and monitoring at night due to potential airway blockages.

In addition to these physical challenges, Orla has Kabuki Syndrome, a rare genetic disorder that affects multiple parts of the body. This condition has delayed her speech, movement, and intellectual development. She also suffers from selective mutism, a severe anxiety disorder that makes it difficult for her to speak outside her home.

Despite these challenges, Orla remains a bright and joyful child. Her family has made an effort to keep her happy, finding ways to laugh and have fun despite her struggles. However, one thing she cannot overcome is the pain she experiences when trying to walk.

The Diagnosis and the Struggle for a Wheelchair

Recently, Orla was told that both of her kneecaps are severely dislocated, which could lead to a complete loss of mobility without surgery. This surgery, however, does not guarantee a successful outcome and could leave her instantly immobile. Her right thigh bone is also twisted, making it extremely difficult for her to walk even with the help of a walking frame.

Orla frequently falls due to structural abnormalities caused by her Kabuki Syndrome and currently relies on a self-propelled wheelchair. However, this wheelchair is limited in its mobility, allowing her to move only a few feet before needing to stop.

Faye has launched a GoFundMe campaign to raise funds for a powered wheelchair, which would provide Orla with more independence. Unfortunately, her application for a special wheelchair through the NHS was rejected, leaving her in a desperate situation.

The Missed Diagnoses and the Impact on Orla’s Life

Faye believes that many of Orla’s current issues could have been prevented if medics had listened to her concerns earlier. She recalls how, as a new mother, she repeatedly tried to alert doctors that something was wrong with Orla’s legs. Despite her pleas, they dismissed her worries, claiming everything was fine.

Eventually, an X-ray revealed that Orla had no hip socket on one side and a severely dislocated one on the other. She underwent two rounds of surgery, which involved placing her in a full-body cast. These procedures were traumatic for both Orla and her family.

Faye also recalls how Orla’s orthopaedic specialist initially attributed her difficulty walking to hypermobility. However, after Orla began screaming in pain while being changed, an X-ray showed that her knees were dislocated. This revelation came too late, and the damage had already been done.

The Emotional Toll on the Family

The years of misdiagnosis and lack of proper care have taken a heavy toll on Orla and her family. Faye describes the emotional strain of watching her daughter suffer and the frustration of feeling ignored by the medical system.

Orla’s inability to use a standard bath or shower has forced Faye to set up a temporary jacuzzi in the kitchen. This arrangement requires two people to lift Orla in and out, making daily routines extremely challenging.

At one point, Orla called a family meeting and broke down in tears, expressing her desire for a proper bubble bath like everyone else. This moment highlighted the emotional impact of her condition on the entire family.

The Future and the Need for Support

Looking ahead, Orla will need several major surgeries that could leave her permanently wheelchair-bound. Faye emphasizes that the current wheelchair Orla has is not sufficient, as it does not allow her to move beyond a few feet. A powered wheelchair would provide her with much-needed independence and support.

Faye also worries about Orla’s education. She has been out of school for over a year, and the lack of appropriate support has made it difficult for her to continue learning. Faye is still searching for a suitable school but feels overwhelmed by the responsibility of caring for her daughter full-time.

A Call for Help and Understanding

Faye continues to seek support for Orla, both emotionally and financially. She urges others to understand the challenges her family faces and to consider donating to her GoFundMe campaign.

While the NHS has stated that it must balance resources across all patients, Faye believes that Orla’s case highlights a critical gap in the system. She hopes that through awareness and support, she can help ensure that Orla receives the care she needs.

Despite the difficulties, Faye remains hopeful. She believes that Orla is a “real ray of sunshine” who brings joy to those around her. Even in her darkest moments, Orla finds ways to make her family laugh and find happiness.