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Please Help Me Understand?

From Kate:

As Getty’s diagnosis day rears its ugly head, I am often conflicted with all kinds of thoughts and feelings. It is easy and valid for Mark and I to feel a sense of sadness when reflecting on the moment we were told to take Getty home. Doctors said, “take her home.” “Love her.” “Go create as many memories as you can.” “You don’t have much time, two years if you are lucky.”

It would be easy for Mark and I to feel a sense of anger and/or anguish to know that there still is no cure or viable treatment for Spinal Muscular Atrophy to date. I often find myself tugged back into anger every time I learn of a newly diagnosed family because I know their experience is almost a carbon copy of what we went through. Over five years ago, our specialty doctors said the very same things they are saying today. Things like……..”there is no hope, you would be lucky to have a year, maybe two. Just take your beautiful and perfect son/daughter home and love them, you don’t have much time. Go create as many memories as you can.”

I understand my anger is coming from a place of grief. I will own it. However, I am still often dumbfounded with these question:

  • Why are doctors and major organizations not talking to each other?
  • If they are having discussions about care and SMA protocols, then why is a small foundation like ours inundated with phones calls and emails asking us for advice on how to care for their child?
  • Why are newly diagnosed families still getting “ancient” material from doctors and advice on the diagnosis of SMA?
  • Doctors, why aren’t you immersing yourselves with updated information?
  • This isn’t meant as an attack, but major nonprofits, why are you continuing to polarize and not meet halfway to create a solidified effort to educate doctors and hospitals for SMA care?
  • Why are desperate families, in need of care, still slamming into the walls of hospital bureaucracy and standards?
  • Who is everyone looking out for?

What I would suggest is that we should all understand that the patient: the child, the teenager, and adult should be the primary concentration. We should stop accepting SMA as a self fulfilling prophecy, as an expiration. Working together to find a simple solution for care shouldn’t become a bureaucratic black hole. Families should feel confident in the care they are giving their children. Doctors should have the knowledge and welcoming ability to collaborate with SMA experts and foundations to embrace a situation and find a solution. Families are just looking for a sense of hope in a time that might very well be the most confusing time in their entire life. They need comfort, they need reassurance that something can be done, they need to be given…….hope.

Frankly, I am tired as a mother of an SMA child, to hear how doctors override the wants and needs of parents, for the sole purpose of what? Thankfully social media has been a lifesaver for so many SMA families. Truthfully, Getty would not be here with us if it were not for a few well versed SMA families willing to listen and willing to educate us swiftly and clearly. Social media gives families the ability to talk in real time with other parents who are and have been on this journey before to offer advice, comfort, and positive strategies to help find positive outcomes in dire situations.

I ask every year in my head as a mother of an SMA daughter……..why? Why are parents having to save each others children? Why aren’t incredibly powerful and persuasive organizations/foundations able to swing some of their clout to create comprehensive education for doctors and hospitals, so when there is a newly diagnosed family, they will be at least given all the tools they need to move forward in whatever direction they choose as a family. In the same breath, doctors and hospitals need to “talk” to each other and create SMA protocols to make sure there is a system in place in the case of a newly diagnosed. Am I asking for perfection? Yes, I think I am. Our kids, teenagers, and adults deserve that much. Absolute perfection. A disease’s rarity is not an excuse for ignorance.

Again, these words I use are not intended as an attack. In fact, these words are used in a way to promote an honest and open conversation. In fact, I hope that everything I have mentioned so far is wrong. Because I would rather be wrong………

I am extremely aware and thankful for the care and expertise of so many doctors and hospitals. Your expertise not only helps your patients, but your advice carries throughout the SMA community and as Getty’s parents we thank you. We reap the benefits of your research, your expertise, and your willingness to help an SMA family when a child is not even your patient. We have been the recipient of several doctors advice since Getty’s diagnosis that live across the United States and you didn’t even charge us. 🙂

So why are family’s still being told that their child has no life ahead of them when it is clear that life after two is possible? We (SMA community) have proven it.

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  • Great insight into how everyone feels who is associated with this dreadful disease. As a grandmother to a SMA child I!m we’ll aware of the anguish that is felt by families when diagnosed. My grandson asked me the other day if he would ever walk and I still have not given up hope.

  • Sheree Norton says:

    Very well said – I have felt the same way on all accounts. If it wasn’t for SMA families and social media, my sweet girl would have lost her battle way too early. I was given an Ambu bag by her Dr. and a Hospice number at 2 months old – Seriously. We live close to Houston, Texas one of the largest Medical resources in the US and this was there response to SMA.
    Thank you for your courage and strength

  • Morgan says:

    Just got to read this – wow.

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