They say ignorance is bliss. Until May 19, 2014 I was ignorant of a horrible disease called Spinal Muscular Atrophy (SMA). That’s the day my son Tim and my daughter-in-law Tara received confirmation that our first grandson Jackson Conner was diagnosed with SMA Type I. It was also the day my beautiful grandson turned 3 months old.
SMA is the number one genetic killer of children under the age of two. It is an often fatal disease that destroys the nerves controlling voluntary muscle movement which affects crawling, walking, head and neck control, and even swallowing. There are 4 types of SMA. Jackson has the most severe form of SMA.
There are many physical effects of SMA that affect and diminish quality of life. There is no known cure.
Outwardly little Jackson looks perfect, and in our eyes he is. However, he is unable to move his little arms and legs. He has difficulty in holding his head up. He cannot reach out to touch the face of his loving parents. What should be a time of joy is instead filled with doctors, decisions and detours.
Our family believes in miracles and we are hopeful for a divine intervention. Our faith will carry us through. Meanwhile, as we deal with this disease, we need to take Jackson’s ongoing care into consideration.
Baby Jackson will require 365 day 24/7 care. No one can do that better than Mommy. Tara will need to stay home to take care of his needs. That income won’t be available. Tim, grandparents and other family members and friends are lending support as best they can. However, financial support is needed to address what is to a difficult battle.
It is impossible at best to determine what those needs are and for how long, until a cure is found. What financial goal even makes senses on something that can possibly be ongoing? As we search out the best possible care, there are all types of medical expenses, treatment, daily physical therapy that must be covered. With the current state of healthcare that is a nightmare in and of itself. Many of the clinics and protocols are not covered by insurance and may need to be administered several times per week. There is travel and expenses and accommodations for Tim & Tara as they seek the best healthcare possible for this little boy. Already that is beginning to take its financial toll. Living expenses and day to day costs need to be addressed. There are protocols, procedures and medical and living equipment that may be required. There seems to be no end to the need that will be required to carry little Jackson THROUGH this. How can we detail the associated costs that surely will arise based on the magnitude of care required?
We are asking that you take a good long look at this beautiful little boy face. He recognizes his parents, he coos and smiles and there is that heart melting giggle at times. But, he cannot move, reach for loved ones, roll over, sit or crawl. Please find it in your heart to donate what you can to this fund to help Jackson beat this and come out better. Any amount contributed will be used for this precious cause. Host a fund-raiser if you can, to help us reach and surpass our goal. If you cannot contribute, please lift up a prayer for Jackson, T&T and the rest of the family. We will keep you informed of Jackson’s progress. If you would like to know more about SMA, you can download a booklet: Understanding Spinal Muscular Atrophy (SMA) from www.fsma.org.