CLEFT FRIENDS 10 YEAR CELEBRATION – STORY #8 “Courageous”
This May Cleft Friends is celebrating 10 Years! Whoop! Whoop! If you or your loved one is cleft affected feel free to email your photo and story to us at firstname.lastname@example.org. We want to share encouraging stories and create awareness about cleft lip and palate in South Africa. You are not alone!
This story has been sent to us by one of the most courageous moms on the Cleft Friends team. We can say this with full confidence that Nelissa Xotyeni has not only overcome the challenges faced with having a baby affected by cleft lip and palate but continues to overcome challenges. It is suspected that her daughter, Amyoli, might have Mosaic Down Syndrome too. Amyoli’s full diagnosis is still being made and so at the age 5 years old we celebrate each milestone with Nelissa as Amyoli grows and develops at her own pace. If this article reaches anyone who can relate to Nelissa’s lived experience with Amyoli please feel free to contact her directly on Whatsapp 082 369 6781. Other organizations in South Africa who can shed more light on genetic disorders and rare diseases are Genetic Alliance South Africa and Rare Diseases South Africa.
“Amyoli Khazimla Xotyeni was born on the 25th August 2013 at 08:23 at Greenacres Hospital, Port Elizabeth. She was born with a cleft lip and palate. I had never heard of it before in my life and we had not seen it in the scans before birth, so we were not prepared emotionally for anything. But due to God’s graciousness, I decided to deliver in Port Elizabeth, where my mum was and my hometown is. In East London, where I work, there was no good structure for cleft support, to my knowledge at the time, in comparison to Port Elizabeth.
So right after delivery, my doctor immediately explained what my daughter had and said that a plastic surgeon would come and see me to explain what cleft lip and palate is and the journey that we would embark on. She also had a birth anomaly called, urachus cyst.
So my first lesson started that day, and since that day we have been on this journey, going strong. We have weekly sessions of Occupational Therapy which we started in the month of July 2015. We started Physiotherapy after Amyoli’s first birthday, on the 25th August 2014.
In 2015 we went to see a Dermatologist for the eczema she had on her body and face. The doctor noticed linear marks on Amyoli’s body and that consultation was the longest I have ever had with a doctor, because he was paging through his research dermatologist books and research sites, and also examined Amyoli’s body, besides the eczema, he noticed something he termed as being “whorled nevoid hypermelanosis” on Amyoli’s body which is a pigmentation disorder. When we were in Port Elizabeth about a month later for a check-up, we brought the aforementioned to our Paediatrician’s attention who indicated that there is a high possibility that Amy may have a genetic disorder that the initial test, on her birthday, did not show. There was also speculation of some sort of mosaicism, big words with no confirmation. It would be great to understand what may have caused Amy’s cleft lip and palate, her brain atrophy (yes we had head scan the previous year in June, whilst Amy was in hospital for chest infection) and her delayed gross and fine motor development.
In 2016 we saw a Geneticist who dismissed autism from Amyoli as well as the dismissal of Cerebral Palsy. She then indicated that we need to do an EEG (Electroencephalographic), which we did, this showed that Amyoli does not have any sign of epilepticforme activity in her brain. We are now left with the skin biopsy for chromosome activity.
We have had the Eelctroencephalographic screen, and thankfully Amyoli shows no sign of any sort of seizures. That is clear. We still have to go for a skin biopsy in an attempt to confirm the initial recognition of skin disorder that our Dermatologist has seen.
My daughter is 5 turning 6 in August 2019. She has started crawling and moving around the house. Crawling, can you believe it?! This is a milestone we have celebrated with her.
Our cleft journey is slow paced as we move as our doctor guides us, we will get there. Amyoli and I have attended 2 sessions of Alternative and Augmentative Communication sessions and continue to try communicate with each other. We still don’t know how this will progress in the long run. Amyoli is at the brink of wanting to walk which is so rewarding and wonderful to watch. Our Geneticists suspects that she might have Mosaic Down Syndrome. But we shall have a diagnosis soon.
There is a positive and constant change in Amyoli each day. She is very playful and very happy go lucky child, who is independent in her play time most of the time. She is a strong-willed and determined little girl who inspires those dear to her daily.”
#cleftfriends #smilefoundationsa #closingthegap #youarenotalone #cleftlip #cleftpalate #cleftstrong #cleftmomsSA #cleftcourage
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