Thanks for taking the time to visit chardanais rainbow pot page
First of all I want I want to tell you about our daughter/princess chardanai, chardanai was born a happy healthy baby on 27/06/06 and lived a normal leading life until the age of three, at aged three chardanai was mis_diagnosed with mild cerable palsy as we noticed her balance when walking was not normal, after the mis_diagnosis we was upset but chardanai did not let her balance affect her she still beamed every day with her beautifull smile, chardanai carried on living life to the full, she attended Park view primary school and was loved by them all, we took her to theme parks had family holidays and she loved swimming with mummy, as she reached the age of five she was admitted to hospital on various occasions with mainly chest infection and sickness, she always made a recovery after treatment with antibiotics, in January 2013 our world fell apart when chardanai was diagnosed with a rare illness called (AT) ataxia telangiectasia
Ataxia telangiectasia (A-T) (also referred to as Louis–Bar syndrome ) is a rare,neurodegenerative, autosomal recessivedisease causing severe disability. Ataxiarefers to poor coordination and telangiectasiato small dilated blood vessels, both of which are hallmarks of the disease.
A-T affects many parts of the body:
- It impairs certain areas of the brain including the cerebellum, causing difficulty with movement and coordination.
- It weakens the immune system, causing a predisposition to infection.
- It prevents repair of broken DNA, increasing the risk of cancer.
Symptoms most often first appear in early childhood (the toddler stage) when children begin to walk. Though they usually start walking at a normal age, they wobble or sway when walking, standing still or sitting, and may appear almost as if they are drunk. In late pre-school and early school age, they develop difficulty moving their eyes in a natural manner from one place to the next (oculomotor apraxia). They develop slurred or distorted speech, and swallowing problems. Some have an increased number of respiratory tract infections (ear infections,sinusitis, bronchitis, and pneumonia). Because not all children develop in the same manner or at the same rate, it may be some years before A-T is properly diagnosed. Most children with A-T have stable neurologic symptoms for the first 4–5 years of life, but begin to show increasing problems in early school years.
A-T is caused by a defect in the ATM gene,which is responsible for managing the cell’s response to multiple forms of stress including double-strand breaks in DNA. In simple terms, the protein produced by the ATM gene recognizes that there is a break in DNA, recruits other proteins to fix the break, and stops the cell from making new DNA until the repair is complete.
We knew now that life with chardanai was going to be a roller-coaster, and it was, there was too many hospital appointments and medication was changing regular and physiotherapy was three to four times a day to try keep her chest Cleared, this was heartbreaking for us to put our daughter through and despite chardanai not wanting to do these she still did and still continued to smile, as parents we had no idea of what to expect we had hope but was always knocked down with facts, chardanai started to lose ability in eating and her mobility was less functioning, we knew chardanai was struggling now with day to day activities, she had operations to help with her feeding and medication but nothing seem to help, In November 2015 chardanai was now diagnosed with liver disease, we seen a change in her colour and swelling to her tummy, we knew our little princess was slowly losing her battle but Still managed to smile and have a good laugh, in January 22nd 2016 on mums (kerrys) birthday chardanai was diagnosed with throat and rectum lymphoma this was heartbreaking for the whole family but for mum it was a birthday she will never forget and my heart really did go out to kerry that day, shortly after the lymphoma diagnosis chardanai was referred to rainbows hospice in Loughborough,Leicestershire and although we was upset and knew time was short with chardanai they gave us a breath of fresh air, they explained everything to us and supported chardanai and the whole family every day, they couldn't do enough for us, chardanai was so happy there that when we went home for a week from rainbows she had us all return so that she could die in peace and knowing her family would have support around them.
On 10th April 2016 at approx 04:18am chardanai peacefully passed away with mum dad and family by her side me (Scott) who is chardanais dad watched chardanai taker her last breath and felt her soul leave her body, we will miss chardanai forever she was so brave and didn't cry about dying once infact she told us to be strong and not to cry, my princess was a true inspiration and I can only belive she was a angel sent from God xx
Rainbows hospice is not just for children coming to end of life they also offer restbite for parents who's children have other serious disabilities, they offer counseling and also accommodation for you to stay with your child, they feed you and allow you to use all there facilities, I really can't tell you how good and caring they are it's a place you have to see for your own eyes to realise how good this place is and how helpful they are for family's in need.
This page is in chardanais honour and I thank everyone who donates for such a good cause, also if anyone would like to take part in an event to help raise money for rainbows please contact me at Scotticeton84@gmail.com Thank you
I'm memory of chardanai Louis iceeton
16/06/2006 -10-04-16 truly missed xxxxxx
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