The video below was the first formal understanding I had of this precious little girl’s situation and her family’s fight for her life. I cried the first time I saw it. Please watch this video and then read the updates below it.
Willow’s disease is indeed rare – there are less than 100 known cases worldwide. As a mother, I can’t imagine facing this and giving up. After all, parents don’t give up on their children. We are there to help them through the tough times, celebrate their good times, love them through their hurts and guide them into adulthood. But giving up was exactly the advice Amber and Tom were given. “Take your daughter home and make her as comfortable as possible.”
The heartbreaking part is that a cure was already in the works. Scientists had already identified the gene, which is one of the toughest battles, but no pharmaceutical company would step up to finance it. Why? I can only surmise it comes down to money, because bringing a drug to market for less than 100 children is not profitable so it’s not worth it to them. I think they are so wrong – every life is worth it – especially a child facing certain death.
I can’t imagine what the first several weeks were like for Amber, Tom and their family. A mixture of emotions – disbelief, anger, sadness, grief but ultimately the emotion that won out was strength. They refused to give up and just watch their daughter die. They stood their ground and hunkered down to fight for the life of their precious Willow, leaning on God for help.
They have made so much progress since this initial video came out, a non profit foundation was formed, United MSD Foundation, collaboration began with other parents across the globe creating a network of support, and a team of dedicated volunteers spend countless hours helping. The first International MSD Conference was held in Ireland where parents, doctors and scientists convened to discuss and formulate a plan of action. I see God blessing their unbreakable spirit to save these children’s lives in so many ways. Matthew 21:22 says, “If you believe, you will receive whatever you ask for in prayer.” I believe within the depths of my heart and soul that this cure will be made. Time is critical because once the symptoms start, they can be arrested but not reversed, so for some children in the latter stages of the disease, they may run out of time. But there are those who are in the very early that could live a completely normal life or would have some deficits but could still move into adulthood if the cure is brought forward in time.
MSD children die a little bit everyday, losing abilities that they had a few months back. When Willow was 2 years old, she was running and playing. She is now in a wheelchair with straps to support her because her little body cannot do it on its own. She receives her food through a feeding tube because she can no longer swallow effectively and aspirates. She fights continual mucous build up because she can not rid her body of secretions like a healthy child. She has to be deep suctioned frequently. Her body is slowly shutting down system by system.
What if this was your child?
An updated video on Willow…you can see the substantial deterioration in just two years. Heartbreaking!
Most would think the biggest barrier to a cure for such a deadly and complex disease would be the science but sadly, it is the money. No company or individual has stepped up. I see the amount of money that we pay to sports players and movie stars and am appalled. We have so many billionaires in this country and worldwide who would consider 3 Million dollars chump change. I will never understand when there is such an abundance of wealth in our country and others, why a cure and prevention for this disease has not been accomplished already. Apathy and greed are cruel traits. Thus, fundraising is left to parents, families and those who have compassion for these children. I am one of them, although I have never met any of them. God put it in my heart to work for their lives.
Yes, we are fundraising (http://bit.ly/2GyeT6N) to move to the next phase in this process but we need prayers above all. We need to humble ourselves and say, “We can’t do this alone God.” And we need hearts of compassion to help us save these children. So I ask for your prayers, shares and if God touches your heart the way He did mine, join us in our effort for these beautiful children.
If anyone has material possessions and sees a brother or sister in need but has no pity on them, how can the love of God be in that person? Dear children, let us not love with words or speech but with actions and in truth.
1 John 3:17-18