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just11b 10 October 2018 17:27

Please pray for my son
I am begging for all the help I can get through prayer, or positive thoughts if prayer isn't your thing.

My baby boy (14 months) is an inpatient tonight, and will be for the next 5-6 days or so. My wife and I brought him to Nemours Childrens Hospital in Orlando to be treated for his Spinal Muscular Atrophy, which is rapidly stealing his life.

I was given two choices for him. The first one, is an FDA approved drug called Spinraza, which has been available for use by prescription for a year, give or take a month or two. This drug, spinraza, has to be administered by intrathecal injection every 4 months, for the remainder of his life. Spinraza has a cost of $125,000 every injection, making it like the 2nd most expensive prescription in the world.

The second choice I was blessed with was a new gene therapy trial that will infect him through an intrathecal injection with a Virus. Inside this virus, will be the SMN1 gene, which he lacks. This is a one time injection for life, versus the every 4 month spinraza doses. He will be ineligible for Spinraza for 12 months while being observed for progress regarding Gene Therapy.

I have had many, many sleepless nights the last few weeks trying to figure out what choice my son would make should he be old enough to do so, and after trusting the advice of my wife, whom is smarter than I am, I went with choice number 2. My boy is going to be part of medical history tomorrow morning at 0730hours.

A human SMN1 gene will be injected into him and if he responds like 98% of the other kids in the study, he will get better. To what degree I am unaware, as are the experts. I and my wife had to sign tons of documents, one package of those documents were a consent for autopsy. What a gut check that was.

Jesus, I hope I am doing the right thing. I dont want to hurt him more than he already is. I could not continue living with myself if I were to be responsible for making him worse.

I am horribly sorry for ruining everyones evening with my drama, I just trust the words from honorable men and women members of this board, and want to make sure I am thinking clearly.

I am at the Lake Nona Nemours, and will be until Tuesday next week. If anyone finds themselves bored, and wants to be treated to coffee, then please reach out. Again, thank you to all that has reached out through P.M. The messages and words of hope have kept me going.

Spinner 10 October 2018 17:29

He will be in my thoughts and prayers, I'm very sorry to hear about his condition.

19MIKE 10 October 2018 17:31

Brother you are all in my prayers. Stay strong. Your family needs you during this most difficult time.

Dangerous 10 October 2018 17:34

Prayers out for the little man and your family (you are part of that!). Stay strong for him and your wife.

meatpaws 10 October 2018 17:34

Praying for your son, your family and your child's doctors. It's not drama you're sending, it takes a strong person to voice their fears and request prayers.

Baildog 10 October 2018 17:42

Good luck to your son and your family.
Sounds like you are doing the right thing.

Ole crusty bastard 10 October 2018 17:44

Our best to the little man.

Stay strong, stay positive.

You and your wife are in our thoughts also.

mdwest 10 October 2018 17:44

Prayers inbound.

ET1/ss nuke 10 October 2018 17:44


Xenonburnout 10 October 2018 17:47

Prayers out.

Shadow 10 October 2018 17:47

Opting for a treatment that has improved the quality of life for 98% of it's recipients so far sounds like the right decision, brother.

Prayers out for healing for your son, serenity for your family, and strength for you.

If you're a believer, believe...

NYwood914 10 October 2018 17:51


Originally Posted by Shadow (Post 1058754520)
If you're a believer, believe...

+1, prayers out.

UncleTx 10 October 2018 17:55

Prayers have been sent to Him.

Sgt Jeep 10 October 2018 18:10

Prayers out!

And a big F U the pharmas! $125,000? Geezus!!!!!

btq96r 10 October 2018 18:13

Given the choices, I'd say you're doing the right thing. But that's without the soul crushing weight of the decision you and your wife have to bear over it. My heart goes out to you.

Hoping the best for your son and your family.

hawkdrver 10 October 2018 18:14

Holy shit dude. Not a religious guy by any measure, but I'll hit my knees for this one.

You are doing the right thing brother. Please let us know how it goes.

DC 10 October 2018 18:19

Prayers out for sure, you're an awesome dad. Keep the faith, brother.

Flatbedder 10 October 2018 18:24

You're doing the right thing, making tough calls as a Parent - in the best interest of your Son.

Prayers enroute.

nofear 10 October 2018 18:32

Your family is in my thoughts.

1RiserSlip 10 October 2018 18:32

Stay strong.

Good thoughts and prayer out to ya

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