Doctors Tell Parents of Two Daughters With Genetic Life-Limiting Disease Only One Could Be Saved

The parents of two children, two years and 11 months old, who have a genetic life-limiting disease called Metachromatic Leukodystrophy (MLD), have been told that only one of their children may be saved.

Mom Ally Wallace from the U.K. brought her toddler, Nala, to the doctor's clinic after she exhibited walking difficulties. After Nala's mobility worsened, she also started to have tremors in her hands. Doctors have been trying to figure out what was ailing the two-year-old girl, so she was placed on the waiting list for a specialist, per Daily Mirror. 

One night, however, Nala started to have the worst tremors and had to be rushed to the hospital. During an MRI scan, doctors figured she might have a brain tumor. Instead, they determined that she had MLD.

After the doctors discussed her medical condition, Nala's dad, Jake Shaw, searched for more information about the genetic life-limiting disease on the internet. He and Ally realized their daughter might not live past her childhood.

Because Metachromatic Leukodystrophy is a genetic condition, the parents decided to get their other daughter tested. It broke their heart to learn that their youngest, Teddi, was also positive for MLD.

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Teddi's MLD More Treatable than Nala

Teddi may still undergo a gene therapy treatment that could save her life since her condition is not in the advanced stages compared to Nala. According to Chronicle Live, the mom and the dad are carriers of a faulty gene that has led to this predicament.

Per the National Institute of Neurological Disorders and Stroke (NINDS), this condition causes a toxic build-up in the white matter of the body's central nervous system. The build-up leads to the impeding of the brain cells and tissues. The prognosis for individuals with MLD is poor, while treatment is mostly done to delay the progression.

Apparently, Ally and Jake's faulty genetics have a one in four chance of being passed on to their offspring. Despite the devastating news that they cannot do anything for Nala, Ally has chosen to see this situation as a life-saver for Teddie.

The mother said that if Nala didn't present any symptoms, they would not have discovered the genetic life-limiting disease and would not have gotten Teddi tested as soon as possible. Ally said that Nala's legacy is saving her sister, no matter how heartbreaking it is. Because of her, Teddi could have a chance of a longer life with MLD.

Teddi will start with newly-developed gene therapy, as well as chemotherapy, in June. The mother said that just thinking about the treatments for her youngest daughter pains her, but she is trying to focus on the fact that this will likely save her life. Along with the gene therapy and chemotherapy, Teddi's parents have also decided to freeze her ovaries for future use.

"[This is] not something you think about doing when she's not even one," Ally said.

Nala's Health Begins to Deteriorate

Meanwhile, Nala's condition has started to deteriorate in the last few months. Ally expects that her toddler will require assisted feeding soon. She said Nala doesn't understand what is going on with her body.

The family has established a GoFundMe for Nala. The parents want to take her on a trip to Disneyland and buy the needed mobility equipment so she will be comfortable during her adventure in the U.S. Part of the money raised will also go to Teddi's treatments, but she has also received support from the National Health Service and the Royal Manchester Children's Hospital for the new gene therapy.

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