Our Personal Journey with our Daughter Alexis
Diagnosis: ADHD (Attention Deficit Hyperactivity Disorder), Intellectual Disability and Language Delay
Effect on Alexis: Inability to speak properly, unable to read, write, follow instructions and communicate how she is feeling
Treatment: Stem Cell Therapy
Cost: Over $40,000, including the treatment and flights for our family to travel to Panama for the treatment
When: July 2017
How you can help: Any donation amount and your support
About Alexis - Where it all Started
Alexis was born in 2008 a happy and healthy child until her 1 year immunisation (Haemophilus influenzae type b and meningococcal C (Hib-MenC) and Measles, mumps and rubella (MMR). About a week after she had the vaccinations, our lives changed completely. She stopped talking and no longer uttered the words she used to; (Mama, Dada, Ate (big sister), Lolo (grandfather), Lola (Grandmother) and a few others. Alexis also regressed in all the normal milestones we would expect from a growing child, we were all so shocked and worried that she once was able to say a few words, and now was completely silent.
A few days later, my husband and I were watching the Oprah Winfrey show with Jennifer McCartney as a guest. She was talking about how her son was normal when he was born but as soon as he got the 3 in 1 immunisation, he stopped talking and was soon diagnosed with Autism. While we were watching, my husband and I looked at each other in disbelief, both realizing the same could’ve happened to our daughter. We took Alexis to the doctor the same day expressing our concerns, but of course we were told not to be paranoid as no proof existed of immunisation causing such things. We refused to leave until given a referral to see a Developmental Paediatrician.
About a month later, we saw Dr. Paul Knight with our concerns. After checking Alexis, he assured us there was nothing to worry about as Alexis was just slightly delayed.
As a mother, I was not convinced that there was nothing wrong with my child. She was now around 14 months, still not walking or hitting her milestones. Both her speech and motor skills were very poor, now only able to say Mama and Dada. We took her to another Developmental Paediatrician, Dr. Duffy, in September 2010, who told us to wait a few more months as she may just be delayed.
Suspecting my daughter had Autism, I asked Dr Duffy if he could confirm but he opposed as she had great eye contact. At this time, Dr Duffy diagnosed Alexis with severe Receptive and Expressive Language Delay.
In February 2011, Alexis was assessed by an Occupational Therapist and she was determined to have limited gross and fine motor skills. We then started Speech and Occupational therapy for Alexis from the age of 2.
When Alexis was 4 years old, we went to the Philippines for a holiday and also saw a Developmental Paediatrician that my Aunt knew. Dr Dimalanta, who then diagnosed her as having Communication Disorder (Mixed Expressive/Receptive delay). He recommended Alexis be assessed by teachers from a school in the Philippines.
After the assessment, we decided for Alexis and myself to return to the Philippines a few months later for a 3 month stint of therapy sessions such as (SPED, OT, SPEECH, OTP). Alexis enjoyed her therapy sessions and we started to see improvements, but unfortunately she regressed very quickly once we returned home to Sydney. We continued with speech therapy in Sydney, but knew that Alexis needed a lot more than just speech therapy.
For the past 5 years we've taken Lexi to the Philippines for about 3 to 4 months at a time for her therapy, lasting 2 hours each session, totalling 6 hours a day, 5 days a week. We see the best results with these longer and more concentrated sessions, which is why it is necessary for us to keep up our sessions in the Philippines.
Here in Sydney we are advised to only take her to much shorter and less frequent speech therapy sessions, which we do while we are in Sydney out of our own pocket as government funding has not been available for the past 5 years. Without funding, we have only been able to let Lexi attend regular primary school without a special needs program. She does not receive the appropriate therapy she needs while she is at school, adding to her regression. Only this year did we finally receive government funding through NDIS.
Unfortunately, every time Alexis and I travel, I must stop working, meaning loss of income with only my husband working to pay for therapy, mortgage, our other daughter's needs and many other bills. It has been a big sacrifice for our family but we knew we had to do what we could for Alexis.
Characteristics of Alexis
Here are some things that we noticed with Alexis, who is now currently 9 years old:
- Therapy is helping but with very, very slow progress
- It takes her almost a year to remember how old she is
once her birthday comes
- She doesn’t know her colors or shapes.
- She cannot read or write
- She cannot arrange her words properly. E.g. instead of saying “I want to have some water please” she says
“Iiiiia wAnt TOOOO water PLEASE”
- She gets frustrated because she cannot communicate properly and becomes aggressive towards her older sister
- She cannot follow instructions well, she may not be able to understand
- Extremely difficult for her to sit still and stay focused
- She has poor impulse control and needs to be watched most of the time when around other kids
- Very affectionate, loves to hug (got into trouble because of this)
At the age of 7 years old, Alexis was still wearing diapers and her speech, gross and fine motor skills were that of a 2 to 3 year old. We then decided to take her for another assessment. We took her to Dr Zalan (Developmental Paediatrician) here in Sydney in September 2015. Dr Zalan tested her using Conners Early Childhood assessment and she was then diagnosed with ADHD (Attention Deficit Hyperactivity Disorder), Intellectual Disability and Language Delay. Dr Zalan prescribed the medication Retalin to Alexis but due to its side effects (nausea, loss of apetite psychosis, stomach pains, agitation & many more), we decided against it. We couldn’t risk giving it to her due to her inability to express herself verbally.
Discovering Stem Cell Therapy
Finally, last year an Aunt of mine came for a holiday from the Philippines who mentioned having Stem Cell Therapy done to Alexis. She gave us contact details of 2 Doctors. We spoke to both doctors at the beginning of the year to get as much information as we could before deciding on the procedure.
The Stem Cell Institute in Panama is the Pioneer in stem cell treatment for various things including Autism and developmental delays. They have either completely healed many children, or improved their diagnosis by up to 80%. Lexi's regular therapy will very slowly assist in her development, however Stem Cell Therapy can give Lexi a chance to develop much sooner.
As Stem Cell Therapy has not yet been approved in Australia, and will still not be approved for at least 7 years (when Lexi is 16), we must travel to Panama as soon as possible as superior results are more likely to occur when the child is younger. It is very difficult to get accepted in to the therapy, but we were lucky enough to be given a place this July 2017.
One night out of desperation my husband found Kenneth’s journey on YouTube, he watched it and couldn’t believe what he saw. He saw Alexis in Kenneth, both very similar in their journey and achievements, Kenneth uses the hyperbolic machine while Alexis uses natural medicines from naturopaths and also intensive therapy.
The Cost of Therapy
As Lexi is now 9, it is getting harder for us to see her frustration at not being able to communicate with us as she should at 9. We are desperate to improve her future. We are willing to do anything for our daughter, for her to have a chance of a better life and for her to know that in the end, we did everything we could in our power for her. The flights to Panama and cost of Stem Cell Therapy will cost us over $40,000, and although we would not normally ask family and friends for help, we are asking on behalf of Alexis. We don't expect large sums, we would be extremely thankful for any amount you can donate. Your generousity will be warmly appreciated. Every dollar raised will go towards her therapy and raising awareness of other therapy choices we have out there for our beautiful angels.
If any of you have met our darling Lexi, you would know how much love and happiness radiates from her. Lexi has found her own special way to show us all how much she loves us, from her big hugs and kisses to her dance performances. No one can make you smile as much as she can. Now it's our turn to show Alexis that we love her, and that we believe in her.
Thank you so much for taking the time to read Alexis' story and for being a part of her very bright future.
About Stem Cell Therapy
Kenneth's story to recovery:
- Glenn Robertson
- Simon Terry
- Mr Anonymous
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more