Chloe Rush
Great Britain- A Life Interrupted: The Diagnosis
- A Rare and Unwelcome Guest
- Tumors and Treatment
- An Uncertain Future
- The Stigma of Illness
- The Science of Hippel-Lindau Disease
- Genetic Origins and a Glimmer of Hope
- Life Interrupted by Illness
- A Ray of Sunshine
A Life Interrupted: The Diagnosis
In a cruel twist of fate, a young English girl named Chloe Rush was diagnosed with a rare and life-altering genetic disorder: Hippel-Lindau disease. The news sent shockwaves through her family, as the 18-year-old had harbored dreams of a normal life.
A Rare and Unwelcome Guest
After experiencing floating black spots in her vision, Chloe consulted an eye doctor. The diagnosis that followed was both unexpected and terrifying: Hippel-Lindau disease. This genetic condition triggers the growth of tumors in various parts of the body, stemming from newly formed blood vessels. While typically benign, these tumors can lead to serious and potentially life-threatening complications.
Tumors and Treatment
To date, Miss Rush has faced three brain tumor diagnoses. Additionally, she lost vision in her left eye as a result of the treatment. Chloe underwent laser surgery to remove the tumors and was prescribed silicone oil eye drops to prevent retinal detachment. For a week, she could only lift her eyes for 10 minutes hourly and slept face down on a massage bed.
An Uncertain Future
Chloe's journey began when she was 13, with two major surgeries to remove tumors. Years later, a routine full-body scan revealed two more brain tumors. Today, Miss Rush is anxiously awaiting a decision from the medical team as to whether surgery is possible. The physicians are weighing the risks, as the procedure could result in Chloe being wheelchair-bound.
The Stigma of Illness
Chloe's ordeal began with a visit to the optometrist, where she complained of flashing black dots in her vision. She was promptly sent for tests. It was at St. Mandeville's Hospital that doctors broke the news that the floating spots she had been seeing were actually tumors.
The Science of Hippel-Lindau Disease
Patients with Hippel-Lindau disease either have no symptoms at all or present with retinal detachment, leading to the perception of spots and flashes of light before vision loss occurs. The condition involves the development of hemangioblastomas, which are essentially blood vessel tumors of the brain, spinal cord, and eyes. While usually benign, these growths can be dangerous as they enlarge, increasing pressure on surrounding tissues and organs. Additionally, individuals with this disease are at a higher risk for developing kidney cancer.
Genetic Origins and a Glimmer of Hope
Hippel-Lindau disease is genetic in nature, but neither of Chloe's parents has a confirmed diagnosis. This indicates that Chloe may be the first in her family to manifest the disease due to a genetic mutation. Chloe has understandably been concerned about her children inheriting the condition. However, there is hope through IVF, where specialists can select only healthy eggs for fertilization.
Life Interrupted by Illness
Chloe's life plans have been shattered. She had aspirations of finishing school and pursuing higher education. However, hostility from some peers who doubted her illness and threatened to harm her forced Chloe to leave school, eroding her self-confidence.
A Ray of Sunshine
In an effort to boost her daughter's morale, Mrs. Rush contacted Make-A-Wish UK. Chloe was treated to a day of pampering in London, complete with shopping, a beauty salon, and a £750 shopping spree. "It was an amazing day. Chloe said she had aches in her cheeks from smiling so much," her mother said. "She can be very shy and reserved. Her mood often depends on how she's feeling. But Chloe deserves to be happy and to feel good about herself."
