We are a young family of four, we have our eldest son Mitchell who is 4 and our youngest daughter Amara who is 2.
We began our journey at 19 when Mitchell was born, we had no idea Mitchell was anything but a healthy big baby, who just had a rough entry into the world after spending 2 weeks in the nicu we finally could go home and then At 9 weeks we received the news of Mitchell’s primary diagnosis- pallister killian syndrome, this had us boggled because well it is extremely rare. Our boy is less than 500 reported cases in the whole WORLD, less than 30 in Australia!!. Although there is believed to be many more undiagnosed or miss diagnosed cases.
Here is a little bit about Pallister-Killian syndrome well it is a genetic condition that occurs during conception, it’s not hereditary or environmental. The malformation is that chromosome 12 has 4 short arms instead of the normal 2. It is a mosaic syndrome which means not all cells that contain chromosome 12 will contain the malformation. The severity of the syndrome is determined by how many cells contain the extra genetic material.
Mitchell is on the scale of severely affected he is non verbal, non mobile, has uncontrolled seizures and now he is nil by mouth- Mitchell declined badly in 2020 and got his peg in 2021.
Mitchell also has type 1 diabetes he is the third in the entire world reported to have both T1D and PKS!
When Mitchell had his peg inserted we discovered how hard it was to find clothing that supported feeds, kept Mitchell’s dignity and was comfy. We have found ourselves cutting holes in suits, hiding the feed him in public- especially with bathers on to feed him you have to virtually remove all clothing! When looking for adaptive clothing to find anything with a child like colour or pattern at a decent price point was so hard to find I looked high and low before beginning our own journey we have brought together our sensory business previously known as MY senses and merged it with this new clothing collection to create precious kids, our sensory business has many products from bubble tubes to tooth brushes.
While on the hunt for clothing I got so fed up and I started drawing up some designs and got in contact with a company to help me bring the designs to life and get my tech packs completed, the designs are endless we will be continuing to bring out more not only for pegs/feeding, we want to branch into. clothing for picc likes, catheters, prosthetics. So please have a browse and come along on our journey into bringing adaptive kids clothing and sensory products to Australia