Alexandra is a 4 year old Medical Warrior with MAND MBD5 2q23.1 gene deletion, metabolic dysfunction of lipids, and Complex 3 Mitochondrial Dysfunction. Her nickname is Squishy.
Squishy was born premature as a direct result of her father abusing me while I was pregnant with her. He was a controlling and terrifying man and I did what I felt I had to do to protect Squishy and my other children from him while I figured out how to get away. We have been free from him since Alexandra was 1 year old.
When Alexandra was born she spent 1 month in the NICU and then was released. She was readmitted into the hospital 1 week later. Over the next eight months Alexandra would be transferred to a total of five different hospitals trying to figure out what was happening with her. In her infancy she was blue and lifeless in our arms more times than I can count. At 8 months old I was told to take her home and spend as much time as I can with her. The hospitals had exhausted what they could do for her, they wrote a prescription for her to have a nurse in the home to help me rescue her. Each step of the way, my older kids would play guitar and serenade her to help her heal. Our own music therapy.
She is battling major illnesses that are extremely rare, although the doctors have not encountered a case like Alexandra’s before, children with similar diagnoses have a maximum life expectancy of about 10 years old. Alexandra is fed by a feeding tube that is surgically placed into her stomach and is expected to need this for the rest of her life. She has progressive damage to her White Matter in her brain, she also has progressively worse EEG’s of the Brain. Right now we are in a fight to slow down her Brain degradation, stabilize her blood sugar and keep her body properly nourished among many, many other things.
At the beginning of 2020 I met a local Business Man named Eddie who has a Guitar repair shop called REXYLAB . Squishy really hit it off with Mr. Eddie and he would meet us at our local Children’s Museum and play with her. Eddie and I have since become very good friends and he invited me to his Facebook Group called REXYLAB Fortress . This group is for people facing adversity that fight through it and overcome obstacles in their way. I reluctantly joined but then I quickly fell in love with the amazing people in his group. He encouraged me to share about my daughter, I tried but I have a difficult time to face the reality of her condition.
That brings me to the COVID-19 Outbreak. Squishy goes to medical appointments several times a week. In addition, a week out of every month I have to take her from Louisiana to Texas Children’s Hospital in Houston. Before the Shelter in Home order was put in to effect her Neurologists told me to take her home and not let anyone in or out. During this time Alexandra’s health took a change for what seemed to be the worst, her temperature started spiking when her blood sugar would drop to critical lows. We’ve since found out that her body temperature is spiking because her body is producing Ketones and basically sending them to her brain to protect it during severe blood sugar lows. What a relief this was! Her body isn’t working as it should but it’s working in a whole new way!
The first time I was able to leave the house and I was cleared for an outing for myself by Alexandra’s doctors, I went to visit Eddie. He wanted to tell me about an idea he had and I needed a break. Now, Eddie has lots of Guitars. He started showing me different ones and telling me things about them while I nodded politely and wondered if this was really how I want to spend my time in my first social distancing outing in months. Then Eddie pulled out an unfinished guitar body and asked me what I would think about having Squishy paint it then give it to my older kids as a memorial piece. A celebration of Squishy’s life that they can use for a lifetime.Playing in honor of their baby sister and keeping the memory alive of them serenading her through all the surgeries, hospital stays, pain and challenges she went through.
I cried like a baby!!!
I mean I straight up ugly sobbed!
This was now the beginning of The Squishy Guitar project. The REXYLAB Fortress group has been collaborating with Eddie and I in launching this amazing Project. Musicians from all over the country are putting together a song for Squishy to raise awareness of our project. Another Musician and Artist Dressed up like a Princess and read Squishy a Story by Video, she's also doing the Artwork for our Pics and a Decal on the Guitar. We even had a Business Owner in Canada reach out and he is providing Custom Guitar Picks for our family to have to go along with our Guitars. It's an amazing sight to see.
We are looking to raise funds to provide Guitars and amps to those with rare diseases to fulfill their Rock Star dreams, enrich their life with music, and to help raise awareness for all the children battling for their life daily due to a rare disease.
Squishy’s condition is very rare, in fact, she’s the only known person in the world that has it. Texas Children’s Hospital is the only one researching it and trying to save her. Sadly there is no money in saving one little girl so they need all the help they can. Alexandra’s Medical Group on Facebook can be found at Warrior TRex Princess Alexandra .
We appreciate any help you can give, I understand that things are very difficult in our world right now. If you have another way to help us with this project, maybe you have a company that would like to donate promotional materials for Sponsor Giveaways, Maybe you have a friend that could help us raise awareness? Are you a friend with a famous Musician? Anything will help us get to our final goal.
Thank You so much for taking the time to learn a little about my sweet Alexandra and our Squishy Guitar Project.