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 had been 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 will not be available. Tim, grandparents and other family members and friends are lending support as best as they can. However, financial support is needed to address what is to be 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 are 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.
Thank you for your continued Love, Prayers & Contributions.
UPDATE JANUARY 2017:
Despite receiving a safety dose of gene replacement therapy in clinical trial, Jackson is very affected by SMA. He still has not gained major motor milestones such as head control, sitting up, crawling, walking or talking and his lung function is still considerably compromised. He continues to require two hour long respiratory treatments twice a day and we do everything possible to prevent any type of illness. He works tremendously hard every day in different therapies including physical therapy, occupational therapy, speech therapy, aquatic therapy, power wheelchair practice and more. Excitedly, we will celebrate Jackson’s 3rd birthday on February 19th! This is a huge milestone considering upon diagnosis we were told Jackson had only a 10 percent chance of living to see his second birthday. And Jackson will begin a home based pre school program next month! He will not physically attend school in person. Instead a teacher will come to our home a couple hours a week. I am working with the school district to find a way to fund the expense of getting Jackson to attend a general education classroom via telepresence robot-VGo. With a Vgo robot, Jackson can “attend” school remotely from home and reap all the benefits of participating in a full time general education setting. I am at the beginning stages of developing Jackson’s IEP with the district and finding a teacher who is willing to work with Jackson and his Vgo and finding a way to fund the robot. We are breaking new ground as this is the first time the district will service a student remotely via telepresence robot.
Recently, in December, the first ever treatment for SMA was approved by the FDA! The approval was the fastest approval in FDA history! This treatment called Spinraza is administered via spinal tap every four months for life. We are hoping to get Jackson started on this drug here at Nationwide Children’s in Columbus. We’ve been informed that the drug will cost upwards of $350,000 annually. It is our hope that insurance will approve the treatment and cover the full cost but sadly we are hearing this is not the case for many other SMA families seeking treatment.
We are looking at staying in Columbus for at least two more years. In our opinion, our physician team at Nationwide is best equipped to administer the spinal tap on Jackson not only because they have invested in Jackson via the gene therapy replacement trial and have his very best interest in mind and at heart, but they are the best in SMA care in the country. We also continue to follow up very closely with the gene therapy team. Our hope and goal is for Jackson to begin to receive treatment here in Columbus and eventually become strong enough whereby we feel comfortable and confident enough to return home.
Jackson is growing and growing and will soon need specialized equipment for bathing, lifting and transporting. We will need to find a new home here in Columbus. The house we are currently renting is two stories and is no longer safe nor practical for Jackson nor his equipment. In addition we need more space. Jackson is learning how to drive a power wheelchair and that thing is huge!
Jackson is also learning how to use an augmentative alternative communication (AAC) device to “talk”. The device uses eye gaze technology to help him select what he wants to say from a screen by looking at an icon or picture and then the computer talks for him. He practices with his speech therapist who brings a loaner device to our house once a week. We hope to receive insurance approval for Jackson’s own AAC device within the year.
In addition to all this, Jackson has become a poster child for passage of the state and federal Right To Try bill. Grandpa and I have been hard at work advocating for passage of the state and federal Right To Try Legislation. Right To Try would allow terminally ill patients earlier and quicker access to safe treatments or drugs held up in clinical trials. Currently 33 states have passed the bill into law and if I’m not mistaken, NJ is not one of them. We have also met a lot of opposition from NJ representatives when we asked them to cosponsor the federal bill at the House and Senate levels.
Thank you again for all Steps Together has done and continues to do to help us provide the best possible care for Jackson. Words cannot explain how reassuring it has been to know Steps Together has had our back throughout our journey and we couldn’t be more appreciative and humbled.