Our Story...

Payton is our first child. My pregnancy with him was wonderful but I do remember feeling him move less toward the end of the pregnancy. I had read that they start to move less towards the end because they get bigger and that there is just less room for them to move so I did not think anything of it.

After 20 hours of LABOR and "failure to progress," I finally received a C-section and Payton was born on July 14, 2000 @ 5:33 p.m. He was beautiful, and scored high on his APGARS. We were sent home with a clean bill of health and everything seemed wonderful.

The only strange thing that I noticed before anyone else was that Payton's coloring seemed "mottled." He always seemed a little purplish throughout. No one else thought anything of it, so I figured I was being my over paranoid self.

At Payton's 2 month well visit, his pediatrician immediately acted weird. He asked a couple of questions about movement and went and got his partner to show Payton to him. They were pulling on his arms and he wasn't really pulling his head up. He was, but not like he should  have been I guess. Then he asked if he always breathes with his belly like this? I really didn't understand where they were going, but I knew it was bad and immediately felt this weird rush of nerves that really didn't ever go away. You never realize how lucky you are to have a healthy baby, until you don't...I know that I didn't.

We were sent for the MRI and neurologist visit. This was the first of many bad experiences with many doctors. Our first neurologist was a mess. NEVER organized, always forgot what we were there for, lost our paperwork, didn't check on the blood work that was sent out, didn't realize they had to send the sma test somewhere else, didn't remember our names when we came in, poor people skills, the list is really endless. After a couple of wasted trips to see him we STILL were waiting for a diagnosis and after many phone calls to his office, we got nowhere. We just had to wait...

While we waited for the tests to come back, Rob and I and our family did not realize the severity of what was happening. We figured worst case scenario, he'd be in a wheelchair his whole life and we would spend ours making his the most wonderful life he could possibly have. We were not very worried, but we were anxious to get the results.

During our 2 MONTH wait for the blood test results, Payton did seem "floppy" to us, like the doctors had said, and I noticed that he sounded congested all the time. I figured that this was because he had allergies or something...I was getting ready for work one day and all of sudden I hear some weird noises. Robs brother and sister in-law were visiting us and the baby. I started downstairs thinking oh God I hope the dogs didn't get in a fight and hurt each other. When I got into the kitchen I realized that Rob was making these noises and he was completely freaking out. Then I see the baby laying on the kitchen counter and he was gray. He was not breathing. I gave him CPR with 911 on the line telling me what to do. After a few rounds of it, Payton came around and started crying and breathing. I knew when we sat in the ambulance on the way to the hospital that something was seriously wrong. I just knew it...

We spent 6 days in the PICU and the intensivist acted like he knew what was wrong but didn't want to speculate. He was very unsympathetic but tried very hard to get the blood test results for us. They just weren't ready. Payton was absolutely fine those 6 days. They kept us for tests and observation I guess. The swallow study had shown that he was aspirating slightly and I was told that I couldn't breastfeed anymore. We had a nurse that was just dying to give me the bad news. She made a couple of references to the fact that he wouldn't be eating by mouth for long. She told me that the intensivist knew what Payton had and the children don't live for long...I was completely losing my mind. I still had no idea what was going on, so I finally got on the internet and started searching for some congenital muscular problem and I found sma after a while. I knew from the first reading that this is what Payton had. He could have been the poster child for sma. The more I read, the more it was confirmed. But I still had no diagnosis, and NO ONE  in my family would even listen to what I had found. They did not want to hear worst case scenario and I can't really blame them. I was definitely praying that I was wrong. But I had to keep it to myself for a long time, and when Dr. Epstein called and told Rob over the telephone that he was positive for Spinal Muscular Atrophy Type 1,  I wasn't surprised.

Payton was close to 4 months old at this time. We were told that he would eventually lose the ability to swallow and either just stop breathing or get sick and stop breathing. We wanted another opinion. We saw neurologists in Miami that were supposedly experienced with sma (we felt as though most people, docs included, really didn't have any experience with this disease and wanted to see someone who was up to date) The only doc that would comment said "look at him,"  "he's very weak,"  "I give him 3 months." Then he left the office.

Rob and I are fighters and so is our son. We were not going to give up on finding some way to deal with or beat this. Nobody was going to tell me that my baby is going to die and when!

Then I found FSMA. I found Regina. All of our friends and family know how close I am to Regina now and how much we love her and her family, but I could really never repay her for what she did for Payton and for us. Regina and Jim Nolan have a son named Ryan that is now 4 years old with type 1 sma. I met them through the FSMA message boards and they were crucial to helping us get the right equipment and sort of gave us the cliff notes on how to deal with sma. Regina is an amazing mom and  Jim is an amazing dad. They do it all and they have for a long time. When I first met them, I looked at Ryan, the bi-pap, Regina suctioning every couple of minutes, etc... and said no way. I can't do it. No way...

Payton started to lose the ability to swallow around 5 months. We started laying him down to eat and eventually it was the only way he  could. We were told later that he probably had been aspirating the whole time, but we didn't know...we were just trying to get him to eat. I really did NOT sleep during this time because HE couldn't sleep. Payton was so hungry but he just couldn't get it down, so he was constantly irritated and frustrated and HUNGRY. We took him in to get the g-tube. What a nightmare...We went to the same hospital with the same intensivist...

This time was better though, even though it was harder on Payton, because we were now pretty well informed parents. We don't like being at the mercy of some nasty nurse that gets a kick out of staring at us and watching our reaction to horrible news like were in some movie or something. The nurse really wasn't as bad as the intensivist though. He literally hunted me down for days, trying to get me to sign a DNR form til Rob and I finally sat him down together and told him that if anything happens when we are around and we feel that it is too much for our son we will say so...if anything happens when we are not around and he is not resuscitated they will be responsible...and we will not now or ever, be signing a DNR form....

It was really strange because Payton was fine. He wasn't sick, he didn't have pneumonia, we were just there for the g-tube. Yet this doc was acting like Payton had only days left. He hooked me up with hospice and actually offered to put me in a private room where Payton could have morphine and we could say good-bye there in case we didn't want to do it at home. We knew that he was not in that bad of shape so we just tried to get him out of there as soon as we could. Fortunately, there were so many OTHER nurses that just loved Payton and were SOOOOOO good to him and to us. I wish some of them did home-health! What a treat it would be! Payton had the gastrostomy and fundaplication (the tying off of the top of the stomach-to stop any and all reflux-vomiting, etc..-if not, he would get fluid in his lungs!!) The surgeon talked us into getting both at once and over with. Looking back it was a good move, but at the time we were not sure. He came out of surgery so weak, intubated, hooked up to everything and anything in the PICU and he was so pale and in so much pain. His scar was much bigger than we had anticipated and just looking at him crushed us. Rob and I both would have gladly done the same operation on ourselves ten times over before we saw him go through anything even close to this....

Payton was finally extubated after a week and a half and we were sent home a few days later. Life was never the same after this....

We initially were sent home with 24 hour nursing. This was TOO much for me, and until recently nursing was always a huge issue...But now I have 4 girls that come for 12 hour shifts on alternating days and each and every one of them is a blessing. They all love Payton so much...they really do. It is my lifesaver to have a nurse here that I trust overnight so that I and Payton can sleep with virtually no worries.

We were also sent home with a DME company, an oxygen tank, a pulse oximeter that we were told Payton had to wear 24 hours a day, a feeding pump for continuous feeds overnight, a suction machine, the bi-pap, masks, yankeurs, suction buckets and tubing, suction catheters, 60cc syringes for bolus feeds and we were like WHAT???????  But we just figured it out. Slowly but surely and I have to say that I must've called Regina every single day for info and she ALWAYS had it for me. Sometimes I wonder what I would have done without her...

At about 7 months, Payton couldn't get through the whole nights' sleep without his sats dropping dangerously low. So we started having him wear the bi-pap gradually until he finally would fall asleep with it and then he wore it all night every night and has ever since.

We also got the in-exsufflator (coughing machine) around this time. We are as aggressive as possible with the in-exsufflator, and we know that it and the bi-pap is what has saved Payton for almost a year now.

When Payton was about 11 months he lost the ability to smile. I remember being really pissed about this. From the neck down this baby can't move or swallow and now he can't smile?? sma is vicious...

On June 2, 2001, on behalf of Payton, Outback Steakhouse (my employer) hosted a charity dinner to benefit FSMA and it was WONDERFUL! We had about 260 guests and raised about $40,000! It was quite a high to help raise money for research!! We felt closer to a cure!!!

There have been no hospitalizations (knock on wood) since the g-tube. I think living in south Florida, his RSV shot every 30 days since he was 3 months old and Payton never being around school kids has definitely helped, but mainly the coughing and bi-pap have kept him well.

Payton is very expressive with his eyes and facial movements. He LOVES his DVD's and has quite a collection. He knows who daddy and mommy and grandpa and grandma and Susan (his PT and the love of our lives) and Sandra (his nurse) and Karen (his nurse) and Solange (his nurse) and Lucy (his nurse) and Eileen (his best friend and speech therapist) are. He likes to play and he LOVES attention! He demands it!! He is very happy and we keep things happy around here. We have fun with him and we take him out as much as we can!

Payton celebrated his first birthday at Universal Studios and we are taking him to Disney in early 2002.

It is definitely hard work taking care of Payton, not just physically, but emotionally. It can be overwhelming to think that this perfect little baby does not have a chance. But when I look around me at all the healthy children in the world and see all the things I would have taken for granted, I am thankful that now I know better, and I cherish every single breath this child takes...and so does Rob...and all we have to do is look at each other and we know what the other feels and thinks....and that makes us like this impenetrable force that is "Payton's parents" and we feel VERY strong in that way. We are not perfect and we make mistakes, but we give everything we have to Payton and we wouldn't have it any other way, sma or not.

Payton will be 17 months old soon and I hear we are about $14 million away from a treatment/cure for sma...no one deserves to live or die like this.....not Payton.....not the thousands of babies that have already died...or the thousands that are alive and WAITING for help....................

I would like to say thank you to all of our friends and family for all of your support...you have ALL been amazing and shown to us how much you truly care for Payton and children like him...and a special thank you to my mom, who I could NEVER thank enough for being there to let me clock out once in a while...We love you all and could not do this without all of you!

Love,
Rob, Debbie and Payton Freeman :-)