Alston Bullock

Dear Family and Friends,
My name is Monica Bullock, I am married to my wonderful husband Kent Bullock and together we have 5 amazing boys Kent Jr., Alston, Travis, Kevin and Chad Bullock.. My son Alston has a complex medical history…epilepsy, cerebral palsy, PTEN tumor syndrome (Cowden) and is global developmentally delayed… he functions on half of the brain and he can not walk or talk. I want to give my son Alston the best possible life and embrace his different abilities. I am raising money to help Alston in every way possible. I would love to see Alston walking with Trexo Robotics. Alston has been through a lot since birth. He has had multiple surgeries, lots of therapy sessions, countless appointments to the doctors offices and a lot of long distance trips to some of these appointments… I see him crying and frustrated trying his best to push through visits. It breaks our hearts to see him trying his best to understand what’s going on around him. I pray that me, his daddy and family will always be here to help him. Everyday I manage situations that others would think are impossible. It is a constant challenge trying to make others understand our challenges and struggles of raising a child with special needs.
We celebrate every milestone that may seem small to others but, it is huge for Alston. It’s the small things that are often a big part of our world. I would love to get Alston all the equipment and services he needs to help him continue to thrive. We are raising money for him to receive Trexo Robotics, a reclining wheelchair for school.. payoff the 2018 Ford Transit purchased with the wheelchair lift and other related medical expenses..

The rest of this letter about Alston’s journey is written as if he is writing it.

My name is Alston Bullock and I am 16 years old. I can not walk or talk and I have right-side weakness. My life story goes all the way back to when I was about 18 weeks in my mommies tummy.. when most parents are finding out if they are having a boy or girl and how they are going to decorate the baby room… my mommy and daddy was finding out that I had something wrong with my brain … I may have had a stroke in utero.. the doctors gave them 3 choices #1-amniocetesis, #2-abortion or #3-just let nature take its course.. my mommy and daddy chose #3…my mommy had appointments every week to monitor me… at about 33 weeks the doctors decided to deliver me via c-section because my mom was 4cm dilated and they didn’t want to risk me having any other complications during delivery…Even though I was early and had hydrocephalus which was seen on OB ultrasound and required initial chest compressions and a CPAP for 2 days… they sent me home 5 days later..my mom and dad thought I was a healthy 6.3lb baby boy because no other test such as a CAT scan or MRI was done in the 5-day stay after I was born.

At home, my mommy said I started making strange sounds as if I was gasping for air and my eyes would roll back, I had moved both arms up like superman and my head would jerk. I had turned gray and the ambulance was called…I had stopped breathing.. this all happen after- 17 days of being born.. while most preemies are still being monitored in the hospital by doctors they sent me home early with no extra help.. my mommy and daddy were very sad…I should have been kept in the hospital a little longer…fast forward a little bit I was continually being sent home… I had 3 ambulance rides.. 2 helicopter rides and 1 private airplane ride..the private airplane ride was donated by a race car driver out of Burlington, NC.. we never knew his or her name to thank them.. so shout-out to the race car driver from 2006…thank you.

I got a diagnosis, I had a seizure disorder…. hemimegaloencephaly..agenesis of the corpus callosum, and premature infant.. doctors gave me an expiration date of 6 months.. and there was nothing else they could do… I was going to die… So my parents and my awesome auntie who was also pregnant with my little cousin had me transferred to the best children’s hospital in NC…Duke…there I had the best care and my mommy and daddy got the good news I was misdiagnosed at the other hospital… I had a corpus callosum.. surgery was required.. at 2 months old.. I had a left hemispherectomy… I was seizure-free for 4 years… thank you, God! At the age of 4, my back started to curve and I started back having seizure-like activity… this started off a little at a time then it became 10-15 times per day … the doctors said it was a habit… I make myself do this… my mommy and daddy didn’t see how this was possible… it would be years after that I was placed on a new seizure medication Epidiolex and 2 other seizure meds… I went a few months without having any seizures…now I average about 3 a day…but the doctors are working on my dosages… In my 16 years I have probably had over 80k seizures… I have had 6 surgeries the biggest were my brain surgery at 2 months old a left Hemispherectomy and my spine surgery in 2019. I am little to be 16 but I am stronger than you think.

This all seems like a lot but I am a happy, loving, caring, and handsome young man with 4 wonderful brothers and great parents… I understand people… I love watching Blues Clues and Wheel of Fortune… I am happy!!! I got a bike from the Great Bike Giveaway 2 years ago. .. I absolutely love riding my bike… It is fun riding my bike outside with my brothers pushing me… they are the best brothers… I do have a walker at home a Rifton Pacer walker and I can push it backwards… It would be super awesome to have Trexo Robotics so I could walk on my own.. the videos they have with other kids walking are so awesome… It would be so exciting to experience walking… I know a lot of people would be celebrating with me and this magical experience…
Lots of love ❤️
Alston Bullock

Family and friends of Alston Bullock are raising money for the nonprofit Help Hope Live to fund uninsured medical expenses associated with Catastrophic Illness.

Alston has chosen to fundraise for Help Hope Live in part because Help Hope Live assures fiscal accountability of funds raised and tax deductibility for contributors. Contributors can be sure donations will be used to pay or reimburse medical and related expenses. To make a tax-deductible donation to this fundraising campaign, click on the Give button. Please share Alston’s page on your social media.

For more information, please contact Help Hope Live at 800.642.8399.

Thank you for your support!