Misty (Khy’s Mum) has a Facebook page called Khy’s Journey-Trisomy 9 Mosaicism. In it she talks frankly about finally receiving Khy’s Trisomy 9 diagnosis in November 2018:
“Our daughter Khy was diagnosed with Trisomy 9 Mosaicism!! It has definitely been a long journey for us, however, the not knowing has meant we have done everything in our power to give her the best life she deserves! Khy was born in NZ, and she is a happy social loving girl. She is developmental delayed and mostly nonverbal; however, she loves to sing and dance! Khy communicates through sign and the Touch Chat app on her iPad, she is bilingual and understands/tries to speak Māori.
Her first few years of life were a struggle with feeding and aspirating, and she had to go on thickened fluids for a bit. She was admitted to hospital with pneumonia 5 times. She eats orally which means no feeding tube, but we chose a plant based dairy free diet for her which she copes with really well. She actually loves food and eating! We also do probiotics and immune boosters to help too. Over the past 2 and a half years I’ve also introduced dōTERRA essential oils which have shown to help with anxiety and balancing her moods, pain management, speech, really just her overall wellness and health. There’s not a day we don’t use an oil for her! We have decided to do a more holistic and natural approach with her. She hasn’t been sick in so long now just the casual runny nose and cough!
She has a scoliosis which in July 2018 she had growing rods inserted as it was at a 60-degree curve being braced. She has had 2 adjustments since then and both gaining just over a cm in length, making her really shoot up in height. It has definitely helped with her left leg being longer than her right and also the pressure on her right hip. Everything is being monitored for changes but so far so good. She does not present with epilepsy/seizures or heart defects, but MRI have shown kidney cysts. She attends a special school, and they are amazing with her. She can say and sign her name as well as many more signs that help her in everyday life! Her diagnosis came about from a pigmentation on her lower extremities, she had a biopsy taken when she was 2 and a half but there were no results. We did another biopsy in July at the same time as her Growing Rod Surgery and finally after a year of waiting we got an appt to see Genetics. They knew it was a mosaic patterning but were doubtful we would ever get a full diagnosis.
After pushing them to do the Chromosomal Test again 6 months later we got the result. Seeing these other children and adults makes me so grateful that she is a part of something special and we want to help and share her journey as well as learn of the journeys of everyone else! Khy absolutely adores her 3 cousins on my side of the family and whenever they are together, she just loves hanging out with them. I have 2 sisters and my eldest sister is her second Mother, she will do anything for Khy. We have a close family and love it when everyone is together.”
In talking proudly about her daughter Khy, Misty said “I just believe that she was meant to be my child, that her having this rare chromosomal condition shows us how amazing and special she really is. How can we not share her caring and loving personality along with her “just get on with it” attitude? We want others to know how inspiring she is and also how she can change the way you think about life as it is.”
“There is something angelic about butterflies that resonates the beauty and kindness of my Khykhy Butterfly. You see, when the universe delivered her to us and, since that day, she has brought kindness, patience, love, and light. Being a part of her journey and being her ‘crazy Aunty’ has been amazing. I play the role in her life as the support rock for my sister and brother-in-law, who both do an amazing job. I am also her go to person when she wants to just talk and sing songs. In the earlier days I remember the doctor saying she wouldn’t talk…she SINGS. I remember him also saying she wouldn’t walk…she RUNS! She has shown that she is bigger and better than all those who have tried to define her. She is my biggest hero and influence. She has the gift to calm and heal and for me she is someone who fills my soul with happiness. I got you my darling, love you always, Aunty Skye.”
Describe your fondest memory as a family:
Most probably the day we moved back to Aotearoa, New Zealand. Living away for 12 years which is most of Khy’s life, the feeling of knowing you were back on your homeland meant everything.
What’s your favourite movie to watch as a family?
Moana!
What’s your favourite activity to do as a family? Why?
Getting out and about so definitely swims and hangs at the beach! We enjoy the sunshine and have a great set up for Khy now that makes it easy for her to be able to be comfortable and relax while we are there!
What’s your favourite song/album to listen to as a family?
Any of the L.A.B albums
What’s your favourite family tradition? Why?
It used to be a NZ holiday every Christmas when we lived in Australia!! However now it is when all the family come to our home over the Christmas, new year period!!
What quote do you live by?
This is a Māori whakatauki/proverb: E huri tō aroaro ki te rā, tukuna tō ataarangi ki muri i a koe. Turn and face the sun and let your shadow fall behind you.
What does a day in your life look like?
We are all about routine. At the moment because it’s school holidays we sleep in until about 9am, we enjoy breakfast together at the table. We listen to music on YouTube on the TV, we get changed and set our intentions for the day (its mostly that she wants to go swimming lol), we love making memories and being adventurous. There is lots of talking from Khy atm too!! We head out (my work allows me to have some free time during the days) …if not we have the carer here with us. We maybe catch up with friends and enjoy our day. Head home for dinner, shower, movie or iPad time, and into bed!
Follow: @khys_t9mjourney_
