Nathan’s Stem Cells for IRF2BPL and Autism

Update October 2024: 

The countdown is on until we head to Arizona!! We are overwhelmed with the generosity and prayers people have sent Nathan’s way. We have 54 more days until Dr. P works his magic with Nathan’s Stem Cells. With the amazing success of his first treatment, we can’t wait to see the results of this one! Nathan’s AAC device unfortunately was shattered in his bookbag on his way home from school one day, but we are happy to know it is back on it’s way today. We should have it by tomorrow. He has been doing a great job with his therapies at school and daycare and he is also exploring potty training more frequently. We bought him the potty seat that has the little ladder on it, and he will put the ladder on it himself when he wants to “sit on the potty.” He’s such a smart! He’s so smart and fast that it’s a constant battle to keep him up with him! I will continuously update this page, even after the procedure, so you can see Nathan’s success that you contributed to- we can’t thank everyone enough. We will one day “Pay it Forward” to other babies in need. 

With love and gratitude,

Jericha

 

Update July 2024:

140 more days til Nathan’s 2nd Stem Cell Treatment! On one hand, we can’t wait.. We can’t wait to see it’s effects, given the transformation he’s made since the last one, but it’s getting close, so we are getting a little nervous about “making it happen.”

Today, we were blessed by Ms. Cheryl and Mr. Dan with this Hot Wheels shaped bed for Nathan! It couldn’t be more perfect, as he’s OBSESSED with Hot Wheels! Instead of taking the payment for the bed, it’s going to Nathan’s treatment. We can’t thank them enough.

Update July 2024: The countdown is on for Nathan’s Stem Cells 2.0, and we couldn’t be more excited to see how they help him this time. We are so thankful for everyone who made the first treatment possible, and for those who have helped us save for the second one. We are working hard to make it happen! We have ~160 days left until stem cells! 

One year ago today, Nathan’s life changed. He received his first round of stem cells. Now, we have December 2024 booked for his second round! (We moved it up due to exorbitant hotel prices the week we originally booked in April.) We can’t wait to see his progress. Teachers and therapists that worked with him prior to his first therapy can’t believe he’s the same child. He has exploded with growth. He went from a child who would seem to be in his own world, to coming when you call him (it might take 2 calls!) and looking when you call his name. He would not have been able to make this progress without the help from family, friends, and strangers. We are so thankful for everyone. Arizona, Dec. 2024, here we come!

Happy New Year! I hope everyone had a safe and healthy holiday season. We had a wonderful one. I wanted to let everyone know how thankful we are for everyone’s prayers and donations for Nathan. Nathan has been experiencing some, soon to be 4, “Terrible 4s.” I call it that because all of our kids seemed to have it (not the typical 2s or 3s!). A lot of it is typical, and the rest is because he is trying to communicate. He just doesn’t know how, yet. His speech device that he trialed has not yet arrived for him to use permanently, but it is in the works. We will be planning his next stem cell procedure for Christmas time 2024. I wanted to share with you this video of Nathan opening his favorite gift from his Aunt, his Imaginex figures, and some other Nathan cuteness. 🙂

Update 11/23

Where do I even begin?! Nathan’s attention, show of emotions, and interest in others has done a complete 180. A few weeks ago, I received a text message from his teacher who told me Nathan said, “Hey, Good Morning” to the kids in the hall (that he sees every morning and they say Good Morning to him). While we haven’t heard him say it, we believe he is trying to talk every day. He makes new sounds, accompanied by new mouth movements daily. We just concluded a trial of him using an output speech device (like an ipad with pictures for him to select words from). We are in the process of getting it in place full time! I will keep you posted with that! When I had a parent teacher conference with his teacher last week, she told me that she, nor the therapists at school, can believe this is the same kid that started last April. He figures things out quickly! He brings his favorite chair to “carpet time” and sits and listens. At home, he has figured out how to unlock, and lock, our baby proof locks. He is non-stop full of love and adventure, and it is totally because of the people that supported his procedure, and we are looking at Dec. 2024 to have his next one! He went from a child that, seemingly, would look right through me and stem back and forth to a kid who runs up to me to give me a kiss and loves chasing his older siblings wanting to play. Don’t get me wrong, he is still the “Naughtiest Nathan you will ever meet;” he lives up to the meaning of his name every day, “God Gave.” Thank you all for your love and support for such an amazing kid. Really, I can’t thank you enough from the bottom of my heart. As you can see in his pictures, he has had a haircut. He looks like a new kid, but I miss his 80s helmet hair!

Original Post:

Hello! Our names are Andrew and Jericha, and our 3-year-old son, Nathan, is the sweetest (and naughtiest) baby ever!

In August of 2021, he was diagnosed with Autism.  After receiving guidance from his amazing pediatric OT aunt and BabyNet, all of his therapies were in place (We are so grateful for BabyNet and his therapists). We were so hopeful that, although he stopped saying “mama” and “dada,” he would one day regain those skills and excel in all areas.

Devastatingly, after whole exome genetic testing, we found he has an ultra-rare genetic variance IRF2BPL (Interferon regulatory factor 2 binding protein like). IRF2BPL is a regressive disorder that can be outwardly expressed at any time. It has been described by parents as the kids being silent prisoners in their own bodies. His neurologist and developmental pediatrician mentioned that he may benefit from stem cell therapy at that time.  Of course, it is not covered by insurance and there is no guarantee it would help.

 

After my sister met many patient’s parents of Dr.P who raved about the improvement their children have had with stem cells, I  contacted his office. I was told that there was a 2 year waiting list at that time. Eight months later, on April 6th at 2 pm, I received a call from his office telling me that they had a cancellation for Monday, April 10. The people ahead of us on the waiting list turned it down (Easter was Sunday). I had one hour to call back and tell them yes or no!

 

 

The AMAZING NEWS is his progress! His eye contact,  interactions with others, bring us his toys when they need to be fixed, bringing his cup to us when he’s thirsty, and helping us when we are changing his clothes– all of these are new and amazing improvements!!!!!!

 

 

The unfortunate news is that he will need to receive therapy at least every two years for the rest of his life.

Thanks to a community rallying for Nathan, we believe his stem cell will continue to get done throughout his life.

We know he IS a  glimmer of hope for parents to read about when they receive the devastating news of IRF2BPL, and it’s all because of people who helped him. 

We will be updating everyone as soon as possible! 

Thank you again for reading about our Nathan,
Andrew and Jericha

p.s. Since this is a life-long necessity, all donations will continually go towards Nathan’s expenses.