Parents of daughters with rare and degenerative disease went from super happy to extremely sad

On June 4, Kyle and Kylie Harrison were extremely happy when they welcomed their third daughter, Kieran. One day later, their world came crashing down upon learning that their two older daughters were diagnosed with a fatal and incurable disease.

Kinley, 7, and Kennedy, 4, have a rare genetic disorder that progressively destroys their nerve cells in the spinal cord and brain. According to the US National Library of Medicine, the GM1 gangliosidosis currently has no cure and will likely kill the patient by early adulthood.

Super happy to extremely sad

The 35-year-old mom, Kylie, told People that she and her husban were a complete disaster upon learning of the heartbreaking news. Kyle, 34, said that they went from super high the night before to extremely low the next day. He said that the girls could survive into their teens and early 20s, but soon, they might be confined on a feeding tube or wheelchair.

They have set up a GoFundMe page to raise $2 million for a one-year clinical trial. They want to raise awareness about the rare disease because they do not want to believe that it has no cure.

First signs are seen

The Harrison couple first noticed the genetic disorder signs when Kinley was two years old. The child had speech and other developmental delays. The doctors struggled to know why the girl was having too many learning problems and issues.

Kennedy showed similar signs within the last six months. The parents had genetic screening done and found that both girls have GM1. They were afraid that their third child also has the condition, so they had her tested too. Thankfully, Kieran is not a carrier of the illness.

Kyle explains that since not many people know about rare diseases, it is hard to get funding or attention. Kylie said that it is ridiculous that doctors are telling them that there is no cure. She also said that they are not going to give up and believe that they will find a cure.

The disease will take away the two kids' lives

Kinley and Kennedy can move around easily as of the moment. They are enjoying playing on the playground just like any normal kid. However, Kyle noted that there is no doubt that the illness will take away their lives. He said that a few weeks ago, they were collecting family pictures.

Kylie was braiding Kennedy's hair when she started crying. She thought that she was probably not going to do that in the future. Kyle wishes that someday his daughters would talk back and have an attitude with him.

Kyle and Kylie are doing their best to maintain a positive outlook in life. They believe that there is a reason why the girls were sent to them. They hope that the children will benefit from their efforts.

The parents of three are hoping that it could help provide more research and funding for other families with the same situation. They are fighting for the two girls because they could not fight themselves. They believe that they have a chance no matter how small.

Tags Parents