Brad Lutz

My son Brendon was born in 1986. By the time he was 3 years old, all he could say was “Dada”. We were slightly worried about his progress so we took him to a specialist who said that they weren’t sure what the problem was. We moved back to our hometown when Brendon was 4, and took him to another specialist. This doctor took one look at Brendon and said that she thought he has Fragile X Syndrome which is a type of Autism. We asked her how she could come to that conclusion just by one look at Brendon. She told us that Fragile X boys usually have similar facial traits, which is a long face and big ears. She explained to us that Fragile X Syndrome was not widely known by the medical fraternity at the time and had only been diagnosed worldwide in the early 1980’s. Medical research had shown that this Syndrome had originated in Ireland several hundred years ago.   The doctor then told us that the mythical character, Peter Pan, and his Irish pixies were all depicted with long faces and big ears. They were depicted this way because of the fragile X boys who were treated as village idiots for many generations.

 There were mining companies back then who would mine a piece of land for minerals and whatever else they could take from the soil. After they had finished and moved on, people would squat on the land and grow crops which they would live off of and sell their produce at markets. The soil that they were growing their food in was missing vital trace elements and minerals which affected newborn babies DNA because of the deficiencies in their diet in the womb. This caused gene mutation which affected the blood chromosomes. Under a microscope, our blood chromosomes look like ‘XX’ for a female and ‘XY’ for a male. When the bottom legs of the ‘X’ chromosome appear to be fractured and floating, then that person is carrying the Fragile X Syndrome gene. 

 The female has 2 ‘X’ chromosomes so if one is fragile then she has the other one to back it up. Females are affected in different mental and physical ways such as anxiety, depression, thyroid problems, auto-immune issues, fibromyalgia(chronic pain and tiredness), migraines and sleep disturbance. The carrier of this gene comes under the term “pre-mutation carrier” and is susceptible to some or all of these conditions. Usually the female is  not affected to the same extent that a male is. The male only has one ‘X’ chromosome so if that is fragile then he will be mentally and physically affected at some level or other. There are different levels of severity of this Syndrome. My son Brendon is deemed to be a moderate case by his specialist. Even so, raising him was quite a challenge as any parent like me would know.

  Through blood tests, we discovered that Brendon’s mother had unknowingly passed the gene onto Brendon. Her own mother had passed it onto her. Because her mother left the family and lost contact for over 15 years, Brendon’s mother never knew that she had cousins who had Fragile X children. If she had of known that she carried the gene, she said that she would never have had children herself. Brendon has an older sister who is not a carrier.    

  We had to medicate Brendon from when he was 6 until he was 16. He also had a type of epilepsy which would manifest in severe tantrums. I didn’t like having to medicate him but I felt that I had to so we could keep our family together and have some sort of half normal life. By the time he was 16, Brendon had become much more sensible and calm so we were able to ween him off the meds. He needs supervision with cooking, personal grooming, and transport but apart from that he looks after himself and is no trouble whatsoever. He struggles with reading and writing so we have to manage his finance and paperwork for him. He receives a disability pension and probably always will. Everyone who meets Brendon love him and enjoy his conversations and cheekiness. All his cousins think he is the best cousin  anyone could ever have.

  

Mellesa Wilson

Hampshire, UK

My little girl Autumn Wilson age 3 hit all her milestones with no problems at age 1. However, a few months before her second birthday we received a document from the National Health Service( NHS) reminding us about her 2 year assessment. We went through the document and realised to our horror that she wasn’t doing a few of the things on there she should be doing at her age. She didn’t say much either but that didn’t alarm us at the time because even Einstein didn’t say a word till he was 4, right!?
We frantically booked an appointment with a speech therapist and contacted our doctor who told us we were jumping ahead of ourselves and that she’ll be fine. We decided to do our own research at this stage and looked into dietary options and stem cell treatments.
At the moment we are working on a lot of treatment options, but I can’t begin to tell you the impact it’s had on our social, mental and financial situation
The treatments offered by the NHS is very basic hence we’ve had to pay for private speech and language therapists, travel to Mexico for stem cell treatments, pay to see dieticians and private Specialist Autism biomedical doctors. The financial impact has been extremely challenging! But am sure most parents would agree that when it comes to this money can’t be an obstacle to ensuring your child is given the best chance of recovery!
To be honest for months I was in denial, I blamed myself, I blamed god, I told myself this couldn’t be real! How can this happen to my child, how would her future be, how would other people treat her when I’m not there and all those thoughts clouded my mind!
Socially it’s been hard for us, I was always worried to leave her with anyone as I knew it would be difficult for them to cope with her behaviour and understand her needs!
At times I was anxious taking her out in public due to the looks that I would get from other parents at the park if she did something that wasn’t considered to be the “norm”.
I was also worried about being around other parents who had “normal” developing children and that in itself kept us isolated!
However, we have come to accept this is the way our daughter is and embrace her uniqueness and accept that we cannot change who she is, and will continue to support her in the best way we can so she can grow up happy and live a fulfilling life!

Sarah Oteng

Atlanta

My name is Sarah Oteng & I am the blessed mother of three beautiful children Azaria 6, Adrain 4, And Asaiah 23 months

Six years ago, on February 11th I heard the heartbeat of my firstborn child, Azaria & my life forever changed. I was charged with purpose; nothing was more important than the wellbeing of my little one. As any loving parent might understand; the second her sweet crying filled the room, our lives became one; her life became my responsibility & in turn my life became hers.

Not long after we embarked on our new family life fate struck & my world spiraled into an abyss. Observing Azaria over the course of 18 months, my husband & I began to notice odd behaviors, primarily in her speech, that could not be ignored. Not knowing what to do, we took her to a pediatrician who said it was a developmental occurrence known as a speech delay. After doubling down on the doctor’s opinion with some research of our own, we thought everything is fine, let’s just give this some time. Three years go by, after her fifth birthday, the absence of any improvement became so detrimental to her relational capabilities that Azaria simply could not make or maintain friendships, even her own siblings felt alienated. As a mother, my heart could take no more of this uncertainty & we went in search of a referral for a professional evaluation. I will never forget that fateful moment, my beloved baby daughter, my pride, my joy, my sweet little sunshine, was diagnosed with ASD. I could not bear hearing this & plunged into a recursive loop of denial. I blamed the doctor. I blamed my husband & I blamed myself. I blamed God until I could blame no more. Consumed by a legion of negative thoughts, pitying myself, I began regressing.

One day, as I was wallowing in the darkness of my own thoughts, I tilted my head left to see, sitting right in front of me, a pair of eager eyes delicately staring back at me with absolutely no fear or anger. It was I that couldn’t bear how my daughter had to fight so many silent battles as a child; being socially rejected by kids & parent not wanting to associate with her, the otherwise unwelcoming looks my baby would get from downright rude individuals, the less than ideal pre-k teachers distancing her from the rest of the class.


It has been a challenging and long road. At first, we’ve completely cut out participating in regular family activities such as going to the park (to avoid discrimination) but, after some time my daughter has shown me another side of me that I never taught existed, patient & strength A side that brought a sense of wholesomeness into our house again.

As her mother, I have always tried to find ways to help my daughter fit in, to conform to society; but I believe it is time for the world to realize, as did I, that just as the people categorized by the spectrum have not chosen this path, the sun did not choose to be the center of our galaxy. Blessings come in many ways, & in the words of God “For to everyone who has will more be given, and he will have abundance; but from him who has not, even what he has will be taken away. — Matthew 25:29, RSV.” Azaria & me will help teach others impacted by ASD that life will blossom according to the nourishment it is fed. Autism has taught our family that life depends not on diagnoses but on attitudes.

Oh, we now also go to the parks whenever, wherever we like.

Afua

Atlanta

My name is Afua, a mother of 4 amazing boys. My 7-year-old, who happens to be my 2nd child was diagnosed with autism at age 3. Like every family affected by autism, this has been quiet a difficult journey for my family. From the time of the diagnoses up until now, my family have been through the various phases of grief, feelings of loss, low and tough moments, etc., but through it all, we have learned to celebrate every little success that comes our way. As a special need mother, I have taken advantage of numerous community resources and all available supports to help my son in any means possible. I have had to change career path and do away with some friendships and acquaintances in my attempt to best meet my child’s need. In all these, I have seen my son develop at his own pace and in his own way. The future still remains unknown when it come to children on the autism spectrum disorder, but one thing is for sure; I will continue to do everything it takes to make sure my child lives to his maximum potential.

Shopping cart

0

No products in the cart.