Just a Mom refusing to give up!
Just a Mom refusing to give up!
This business is to provide literacy, interpretation and resources to underprivileged children, schools, libraries and children hospitals. I have written and published my own first children's book where the story teaches trust , positive affirmations, learning to see themselves for their abilities oppose to focus on their disabilities. The 6 disabilities in the book are Autism, Cerebral Palsy, Down Syndrome, Hearing Loss(DEAF), Muscular Dystrophy and Rare Disease. The goal is not only donate this books and accept these donation but travel from city to city to in person read to these children have a Q&A sessions. I also offer Medical Interpretation in Spanish
Aj was diagnosed at 7 years old.
Symptoms for Aj are :
easily distracted, fidgeting, difficult time waiting their turn, hyperactive, trouble listening.
Aj was diagnosed at the age of 7, although we classified him autistic at home since the age of 2. Aj's symptoms are:
Great ability in remembering details, time, & numbers. Lack of back and forth conversation, repetitive behavior and activity, stimming and flapping. Obsession over unusual interest and facts.
Aj has been diagnosed with a developmental delay from before his 1st birthday. Aj symptoms varied :
Physical by not being able to sit up till 9 month.
Cognitive where he had a hard time with hand eye coordination.
Communication because he started verbally speaking at the age of 4.
Social because he often isolated himself or paralleled played.
Also known as Fecal Soiling or Fecal Incontinence. Aj has suffered from constipation. bloody stools and bloating. Aj has worn diapers until the age of 8 and for 7 years has been on daily stool softeners. After an aggressive treatment for 6 months Aj soils a little and has begun defecating in the toilet.
Microcephaly known as small head size and recently more common in relation to the Zika Virus. Aj has had these symptoms since a baby :
Facial distortion, absent seizures, coordination difficulties, hyperactivity, failure to thrive and high pitch cries.
Micrognathia was first diagnosed when Aj was 2 months old. Along with other facial anomalies this was one that required specialist , changed of sleep positions due to apneic spells , feeding difficulties for months. This is a watch and wait condition because it can correct itself unfortunately for Aj it has not and will have a few procedures ahead.
NK Cell Deficiency for Aj was first seen at the age of 2. He suffered from reoccurring high fevers weekly. He first tested to have a low count but after the second test he had no NK cells. Natural Killer cells due exactly that fight against virus, infection and cancer. Without them Aj is susceptible to illness and are at higher risk than most.
Strabismus means to have misaligned eyes. Aj has been wearing glasses since 4 months old. His eyes first crossed in after a high fever and have remained turned inward toward the nose. This form of strabismus is called Esotropia. Aj has had 2 eye muscle surgeries on both eyes. Esotropia also affects Aj's coordination which interrupts his life daily.
Subglottic Stenosis leaves Aj with a narrow airway. Aj was diagnosed after a bronchoscopy which was a camera procedure of his airway. Aj was 3 years when he was diagnosed. As a daily precaution Aj takes a breathing treatment daily by using a corticosteroid inhaler.
A bacteria where these germs enter your digestive track. Symptoms include vomiting, nausea, bloating , pain. Treatment includes multiple antibiotics for 2 weeks at a time until cured.
A chronic immune system disease where the white blood cells known as eosinophils enter the esophagus. Also known as a Allergic Inflammatory Disease called E.O.E
I am looking for more answers, people that may have found this gene during their genome testing. Our geneticist states that this gene is linked to severe intellectual disability. Aj doesn't fit that criteria and we are unable to find much more information. Researching the gene leads us to cancer correlation only.
I am looking for more answers, people that may have found this gene during their genome testing. Our geneticist states that this gene is linked to the X chromosome meaning males, located in the testis. This gene has been linked to infertility. According to our specialist it has been seen in another child with Autism.
Since the birth of Aj, it has been my mission to find answers to the many complex issues my son has endured. We have good days, slow days and some bad days. With all the hundreds of test performed more than a dozen biopsies along with surgeries we have come so far. It's time we use social media to CONNECT , the website and my voice to ADVOCATE, the internet to SEEK answers and hopefully in the end we can all EVOLVE!
So help me help him and make his C.A.S.E