Lili J wish for a Sensory Room

Lili is 2 and a half years old. She has a very rare genetic condition named Aicardi Syndrome. Lili was born 10 weeks prematurely by emergency C Section due to placenta previa. She weighed just 2lb 15oz and was absolutely tiny.


She was well cared for in our local SCBU. She had a few ultrasound head scans which had showed she had some abnormalities on her brain. We were told to 'look out for things that didn't seem right'. We took her home after a very long and stressful 7 weeks. We enjoyed feeding her via bottle, seeing her grow and start reaching her milestones, smile, laugh, hold head and so on. We honestly thought she was proving all these health professionals wrong!


Then on 2nd December 2012 Lili had her very first seizure where we immediately rushed her to our Hospital. From there she was transmitted to the UHW (University Hospital of Wales). After running a few tests, Lili was diagnosed with Aicardi Snydrome. We were absolutely heart broken. We were just given a diagnosis and that was it. We had to do all our research online. After reading everything and seeing our beautiful little baby suffer with these horrible seizures everyday was a living nightmare. We had no idea how we would cope, how not to panic when she had a seizure but something we did know we had to do was be strong for one another and be brave for Lili. We are her parents and our job is to protect her and look after her as best as we can.


After we were admitted home, everything felt so surreal. Lili was no longer smiling, laughing or lifting her head. She was having great difficulty drinking a bottle, swallowing her epileptic and reflux medicines. Just a few weeks later Lili was rushed back into Hospital where she was being treated for pneumonia. Whilst in Hospital Lili's seizures were getting totally out of hand. She ended up being rushed to Intensive Care where she was put on a life support machine for a week. It felt like our world had came crashing down. Just a few weeks back we had a healthy , happy baby girl, and now she's stuck on a life support machine fighting for her life.


To say it was traumatic would be a complete understatement. But our Lili fought through and was home after 3 weeks in hospital. We had experienced emotions we never thought or knew existed, but all 3 of us came out of it all stronger. After numerous trips back and for the Hospital with chest infections, we got used to it all. It did emotionally and physically drain us, but our main priority and worry was Lili.


Lili is now fed via a NG tube and is on a strictfeeding regime. Lili's condition means that she suffers with infantile spasms every day, her eye sight is not 100%, she can not talk, she can not hold her head up, she can not sit up, she can not crawl, she can not walk, she can not communicate with us, she does not laugh, she does not smile often.But, it's not about what she can't do. It's about enjoying every second of every minute of every hour of everyday with her as this condition is life limiting.


She has a neurologist, paediatrician, dietician,community nurse, physiotherapist, occupational therapist, portage worker, respiratory nurse, consultant, a COT's team and a disability social worker.This page has been set up purely to raise awareness of Lili's condition, for people to follow Lili's story and to help Tree of Hope support Lili get the equipment she needs for her sensory room in our home .


The benefits to Lili having a sensory room with this specialized equipment is: supports the development of her communication, enhances her sensory skills, her hand-eye co-ordination and cause and effect response, assists the development of her social and emotional skills, reduces her tension andincreases relaxation, provides fun and enjoyment, improves her levels of concentration, alertness, calmness and general awareness We are hoping it may even decrease her seizures as she can have over 20 on a bad day.


She absolutely loves lights and music. This sensory equipment will benefit Lili hugely, so please support Tree of Hope.

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