In 2013, Sarah, at 6 months pregnant received the terrible news that their baby girl was dying in the womb and if she was to have any chance of survival, they had to get her out immediately. Sarah was blue-lighted to a specialist hospital in Kent where Ishani was born by cesarean section.
Ishani was under two pounds birth weight and only given hours to live, yet the little fighter held on and eventually started to make progress. Spending 103 days in the hospital, it was so hard for the family by her bedside every day as she started to build her weight. On reaching 5lbs, and just as they were celebrating that she would soon be allowed to come home on oxygen, routine tests revealed the devastating news that Ishani was profoundly deaf. Only days later the pediatrician brought her parents a further body blow that their beautiful little girl had retinopathy of prematurity and they had to blue light them once more to London to operate to save her sight. All this would have been traumatic enough, but Ishani's conditions (listed below) now include more that only came to light as she progressed through babyhood.
CEREBRAL PALSY, PROFOUNDLY DEAF, SEVERELY IMPAIRED VISION, NON - VERBAL, CEREBELLAR HYPOPLASIA, EPILEPSY, HYPERKINETIC MOVEMENT DISORDER, SWALLOWING ISSUES THAT REQUIRE HER TO BE TUBE FED, SLEEP DISORDER, SEVERE DEVELOPMENTAL DELAY, BRAIN BLEEDS.
AND MORE IMPORTANTLY VERY BEAUTIFUL AND ADORED…
Ishani is the happiest child, with the most pleasant nature and everyone loves her. She does, however, have sensory seeking issues and requires constant 24-hour supervision to stop her self-harming. She has no awareness of danger and whilst she is trying to stand her balance issues and seizures make this dangerous for her and she cannot be left alone for a minute.
Whilst Sarah and Jay more recently have received some help with her care, she now requires two to one supervision as she is so physically exhausting and intense to manage. She is constantly on the move, be it on the floor, in her chair, or constantly walking on a journey of texture discovery. Whilst Ishani now has learned to walk in the last two years, the carer(s) must support her balance which is affected by the Cerebellar Hypoplasia, as she can easily fall or could have a seizure. Her sleep is disturbed by her abnormal brain activity, and she will often wake up for several hours in the night.
The link to the video below tells the story from birth to 12 months. It is a video that Sarah made to celebrate her little miracle’s fight to survive and their pride in Ishani.
Since one year old, Ishani has been in and out of the hospital with various operations and procedures that no child should have to endure. Now at seven, she has come so far, and we are all so very proud of the courage and determination of our little rock star Ishani! All this achievement for a child that they were told wouldn't grip or sit up. Her favorite occupation is holding your hands and jumping!
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Joined 7 - 6 - 2021