Batten disease is a fatal neurodegenerative disorder that takes away childhood, and then takes away the child. But there is hope.
When a child is stricken with a deadly, little-known disease, the home can suddenly feel like a lost sailboat in a stormy sea. Waves of emotion overwhelm what had been a serene, happy place, and each family member faces challenges of how to move forward.
News of the diagnosis can take everyone off-guard, including the parents. Knowing their role is to always be in control, they find their world turned upside-down. But somehow they must cope and help the terminally ill child and the siblings do the same.
For a heartbroken mother or father, positive steps start by finding gratitude and savoring each day the affected child is alive while fostering that perspective for the rest of the family, says Charlotte Benson, whose daughter Christiane, 15, suffers from juvenile Batten disease, an incurable neurological disorder that results in blindness, seizures, loss of motor functions and speech.
“Every day has to count,” Benson says. “You learn that when you receive a diagnosis that’s devastating. Every day is a gift. It’s an opportunity to share a moment together.”
Benson, who with her husband, Craig, started the Beyond Batten Disease Foundation (www.beyondbatten.org), specifies three areas where parents can help their family deal with the reality of a child’s terminal condition.
- With honesty/acceptance. Parents may want to hide or delay the diagnosis, so as to protect the siblings emotionally. Benson, however, says honesty helps establish a new normal and gives the siblings coping skills for their adult lives. “One thing that’s been very successful for us has been to take the approach of complete honesty about Christiane’s condition with the children from the very beginning,” Benson says. “It’s kind of a gradual assimilation to a different reality. If you give children a chance to adapt to their circumstances, they do it beautifully.”
- With faith and inspiration. “Our faith has been an irreplaceable source of comfort,” Benson says. “We believe that Christiane’s life has purpose and meaning, and trusting that God has a plan for her life allows us to accept the places where we are powerless. We’ve also tried to teach our children that it’s not what happens to you in life that matters, it’s how you handle it that counts. A diagnosis like Batten has the potential to take you out at the knees and cripple you for life. But then you have a choice of whether you want to live feeling sorry for yourself, try to make the most of what you have, or even better, live trying to use your misfortune in a positive way for the good of others.”
- As a small window in a big picture. Benson says the challenge of having a child with special needs “completely changes your life in every perspective.” With a child’s life shortened, the “future” has a more fleeting definition. “It really paralyzes your ability to dream about a future in a conventional sense,” Benson says. “You have to re-frame how you think about the future. You try to keep your dreaming in finite chunks, because you may not know what your child’s condition will be a year from now.”
“Any life path can be full of extraordinary trials,” Benson says. “In our case, we are inspired by Christiane, who continues to be independent, spirited, determined, and courageous as she faces her own challenges of living with a deadly disease. She reminds us that we can all decide to believe beyond our own limitations and fears.”
About The Beyond Batten Disease Foundation
The Beyond Batten Disease Foundation (www.beyondbatten.org) was launched in 2008 by Craig and Charlotte Benson, whose daughter, Christiane, has juvenile Batten disease. The non-profit foundation’s goal is to help eradicate the disease by raising awareness about Batten and funding research for a cure. As part of that effort, the foundation is trying to raise $6 million to advance an important medical breakthrough that slows the disease’s progress. The money is needed to get the research through an expensive validation and development process so that it can receive FDA approval for clinical trials.