Asli's quilt    (Quilt Completed)

Thank you

Thank you very much for all the nimble fingered busy bees that put all the work in to make this amazing quilt for Asli. She was so excited to open her package last night. To Diana Tanner you do an amazing job I am in love with this quilt. Very great full

Finished photos

Individual squares

Card

Stitched by: Rae Corbett

Biography

Asli was born in march at 37weeks no2 of twins.She has a twin brother who has no issues and came home from hospital after 2 weeks Asli went on to stay in special care unit for approximately 30 weeks (October). This was the longest hardest time over that time the dr referred to her as a puzzle they could not figure out what was going on. She was feed with a NGT as she could suck she could not tolerate my heart milk and many of the formula's they did so much testing mri bloods sweat testing for sf (3times). All with no concrete answers.Asli was sent home eventually still with the Ngt feeding tube and on numerous diffrent medications.After we came home we ended up after 3weeks in the children's hospital with Pneumonia.The children's hospital is amazing and they quickly got a care team together who still work with Asli till this day.So now our long journey begins with still no diagnosis we worked with OT Physio Gastroenteritis and specialist Pediatrician. Asli had loads more testing where they found she had melabsorption so didn't gain weight and also a white mass on her cerebral artery in her brain but still no diagnosis.Asli's strength and determination to do everything her brother was doing eventually with a he'll of a lot of physio got her moving and eventually walking at age 2.It was around this time that the audiologist referred her out to Australian hearing and Asli got her first lot of hearing aids she already had glasses for a stigmatisim (turned eyes) so now she had full accessories.At around age 6 while doing funding for school we needed a diagnosis so the Pediatrician finally said to me that she falls under the CP bracket so that would be her diagnosis even though she presented in the complete opposite way than the standard cp.She had no spasticity in fact her joints were very loose and she had low muscle tone.I then found out throw cognitive testing that she would have no functional writing skills due to her toning and fine motor skills.So from this time on she was treated as a CP kid she wears AFO's on her legs and has done from a very young age she has a wheelchair for distances over about 200m as she gets to tired and can't walk much further than that. Asli is a determined girl she has mastered the computer to be able to do all her schooling (croxton special school) to her individual ability.Asli is prone to falling and has broken numerous bones the latest being a dislocated knee that at present they are deciding if they will operate on to fix the knee dr thinks he beeds to but that would mean a much bigger op to straighten her legs so the to orthopaedics specialest are discussing that But it wasn't till December 2022 when our Pediatrician decided to redo Asli's genetic testing as it hadn't been done since she was around 5yrs and this time he wanted to test me and her father.So in early 2023 I got the genetic testing done (mouth swab) not expecting much the geneticist when we saw him didn't give us any indication that he suspected anything but he was interested in her sparce eyebrows and face shape ?? Being mixed race (Somalin/Australian) these features were not out of the ordinary. It was around June 2023 when I got a call out of the blue from the geneticist telling me we had news. Asli is now 17 and for all these years we had never had any definate answers until that day. Asli was diagnosed with a rare disorder called Kabuki syndrome I was shocked to say the least after all these years we were finally starting to get answers all the puzzle pieces are starting to make some sense.As for the future she will constantly need OT Speach therapy and Physio and now going into 2024 we will need to start a whole new game plan and make a final decision on surgery on both her legs which now with kabuki syndrome may be more likely.I hope this helps you all to get to know Asli a little better