Support Brenna and Brylee in Their Time of Need

My name is Brenna Taylor and this is our story. So 8 years ago 10/26/16 was the scariest day of my life! I lived in Indian village apartments and Brylee my son was sick the day before... Well on this day 8 years ago he's was being his 7 months old self was playing with Taylor flirting with her acting like he was much better from the day before.. then all the sudden he stopped playing head went to the floor and he was unresponsive I had to call 911 and aelynn was playing with her friends outside so not only was I trying to stay calm but also trying to find aelynn the 911 operator asked me if there was someone more calm to talk to.. thankfully Taylor Ready was there and she stayed on the phone with them. My grandma Carol came running into my apartment just as the ambulance was getting there heard everything on scanner of course) she scared me because she looked like she was going to fall over her and Dad then helped find aelynn and while the emts we're trying to get him to get consciousness back I was in front of the ambulance calling everyone of course they all beat us up there brylee by that time was stuck 17 times and they kicked Justin and I out of the room because they wanted to do an IV through the bone but just as the kicked us out they found one in his head still not very responsive they sent us upstairs where Brylee went into a grand mal seizure we had 20 nurses in the room within matters of minutes! I still thank Mercy for the quick response the next day we got transported to Iowa City where brylee did a lot of testing they couldn't find out what was going on. They ended up sending us home after two weeks of hospital time. We got back home and every month at least two weeks out of the month we were in the hospital, basically became our second home. So then we started seeing Iowa City doctors by the time he was two he started his infusion (ivig) because they couldn't figure out what was going on... He kept having absence seizures. With the infusion then he started getting better but he was getting sick right before that 4th week would come up for his infusion. Now we go every three weeks! The doctors tried telling me he would eventually grow out of this.. well now the Now Time has passed and Brylee has to have infusions everything 3 weeks but has been complaining of headaches, his belly hurting really bad, and nose bleeds even after the first surgery back in May... Well brylee got two ultrasounds done and x rays and we found out that his spleen and liver are enlarged and so they did a full body PET scan on brylee to find out his liver and spleen are slightly more enlarged then the last ultrasound showed and he has a bunch of lymph nodes in his body that are getting big.. Brylee was diagnosed with : Autosomal dominant immunodeficiency associated with mutation in PIK3R1 gene, Chronic night sweats, Hypogammaglobulinemia, Lymphadenopathy, Splenomegaly.

Well his gene took a turn and are showing new symptoms and he's the first on paper case of this..! We've had amazing support and continue to do so but me being off work too puts us at a huge hold on life I have reached out to all the places needed and so far know where can help that's why I started the go fund me page along with posting my tags for venmo cash app PayPal and Facebook pay. I'm literally not trying to be mean but I'm just trying to make sure my family is good! Brylee has grown up to be the most thoughtful caring boy ik. And he may have these problems but he can pretty much get his self prepared for his own infusion and can give blood like nothing is happening.

update: we went to Iowa City Monday Oct 28-oct30th where brylee has

a lot more appointments coming up. they want to do a lower scope on him. his surgery for his nose.. more blood work. he was too congested for them to do anything to him while we were out there. I'm still off work and we still are waiting patiently to figure out more answers. of course I will continue to update when I can! thank you

Respectfully,

Brenna