Daphne Enger was a typical spunky, sassy, happy 3 year old with a slight speech delay. To be expected, her old brother had the same speech delay issue at her age. But an issue that he didn’t share with his sister happened one night in February 2019. The issue came in the form of a terrifying seizure that left Daphne at the bottom of the stairs sprawled across the first step in the crawling position. It was obvious that at the start of the seizure Daphne had attempted to crawl up the stairs to get to her parents who were at the top of the stairs. The sight Daphne’s parents Brice and Lindsey Enger saw when they looked down the stairs and saw their daughter sprawled out about to crawl at first seemed like she was so exhausted from a fun day of playing and smiling she had fallen asleep mid crawl on the stairs. But to their horror as they came closer to Daphne to pick her up in their arms they realize she was acting different than she ever has before. Her body was convulsing, she was turning blue from lack of air to her lungs, and her eyes had more fear in them than anything they had ever seen before. A call to 911 and a trip to the emergency room where it was determined that Daphne had in fact had a seizure was just the beginning of many more terrifying seizures. Many more emergency room visits. Many more hard falls to the ground. More tremors and body shakes, more fear filled eyes. Many more questions with unknown answers. Till in July 2019 after a prolonged trip to the MN Epilepsy Group we got Daphne’s genetic tests back. We got the worst case scenario answer of what was going on with Daphne. Daphne has Batten Disease. Her form being CLN2. Her brain doesn’t make a very important enzyme needed for proper brain function. She is going to get worse. She is going to get much worse. Every motor skills she has gained in her 3 years of life is going to be taken away from her. The words she has learned to say will be taken from her. Her ability to dance and play will be taken from her. Her ability to run and walk will be taken from her. Her ability to eat will be taken from her. Her ability to see will be taken from her. Her ability to breath will be taken from her. Her life will be taken from her. The disease is in her genes. So we mourned the beautiful fun loving sassy girl that we were still able to see, hold, and talk to. To mourn a child still alive is a situation I can’t describe. We gave ourselves two days to mourn and to cry. After two days passed with us crying and holding the child we were told would be taken from us very soon in the years to come we reached out to find out what we can do here and now to give her the best possible life right now and what we needed to fight what we were be told as fact which was that your child is going to deteriorate and die. We immediately got her set for brain surgery to put a port in her brain to start the Brineura (cerliponase alfa) enzyme replacement treatment that will slow the deterioration and give us the gift of time with our daughter. The gift of more time with her and more time for a cure to be found. And so Daphne fights. She has been fighting every single day for 2 and a half years. She has lost most all her words. She lost her ability to dance. She lost her ability to run. She has started to loose the ability to see. She fights with everything she has every minute of everyday not to loose more. As the mother and father of a such a brave and strong girl we are in awe of her resilience and determination. Though she continues to loose as kids her age continue to gain. Other children Daphne’s age gain words, skills, talents, abilities. Daphne looses these things, but through it all keeps her smile. Through all the loss she has always kept her smile. Her smile and her sass. We have not and will not give up hope and faith for a cure for Daphne before it is too late. Though Daphne’s disease is in her genes there are medical advances being developed and tested to alter peoples genes. These medical advances have the ability to give back what has been taken away. To change her genes to make her brain develop the enzyme it needs for proper brain function. Daphne and the other children battling Batten Disease CLN2 need these gene therapies. We need the FDA to see that these children’s lives have potential, they have meaning, they have the right to live the same full and long life everyone else is promised. These children, including Daphne, deserve to live. There are companies testing these gene therapies successfully. Now we need the FDA to approve these gene therapies to get to our children. The parents of children with CLN2 have only our children’s best interest at heart and their best interest are to be part of these gene therapies. We need to give our children every possible chance save their lives. To give them a long and fulfilling life. These gene therapies can save our children. Please sign the petition found at this link (
https://chng.it/wRZjqXZk9G) and share with others to sign this petition so we can get the attention of the FDA please and save our children.
