Our beautiful daughter was born in September 2016 with neonatal meningitis which meant she had to be admitted to the intensive care unit shortly after birth, requiring oxygen to support her breathing as well as a course of antibiotics to fight the infection. Fortunately the treatment was successful and after a short period of time she made a full recovery.

Over the months following her birth she was admitted back into hospital several times with other less serious infections.

When she was about 2 months old we started to notice that she didn’t seem to be able to see objects that were put in front of her and she didn’t make eye contact with us or follow our movements. As a result we raised our concerns with our GP who referred her for a sight test.

She subsequently underwent a number of tests on her eyes which revealed that she is severely visually impaired. We currently don’t know the cause of her visual impairment but the doctors who are treating her believe it stems from a genetic defect and is not connected to the meningitis.

On top of the issues with her eyesight she also appears to suffer from some physical developmental issues. She is now 11 months old but is unable to roll over or sit up, and has difficulty coordinating her movements to an extent which the doctors believe cannot be explained solely as a result of her visual impairment. She also has difficulty swallowing which means she is currently tube fed and has been placed on the waiting list to have a gastrostomy tube fitted.

She has unfortunately also developed a condition called West syndrome. West syndrome is an epilepsy syndrome which causes infantile spasms which she now experiences on a daily basis and which she is now being treated for with anti-epileptic medicine.

With all these problems it makes it hard to be able to go to play groups and for our baby to develop friendships with other children. Her social interaction has been affected alongside her development.

She really enjoys playing with sensory items like bells and bright lights etc. We would really like to be able to make her a proper sensory room at home, but with me currently having to take a career break to look after her its very difficult to be able to provide all these things to help her develop.

We have been advised by a lot of people to set up a page to help raise funds to be able to provide her with these things.

Thank you for reading our story and Thank you for everyones support.

Update: We’ve recently been discharged from hospital following a 4 month stay during which Ameli’s day-to-day needs have changed and a definite diagnosis was established regarding her developmental problems and epilepsy. We originally took her to hospital due to a noticeable increase in the frequency and severity of what we believed to be her infantile spasms. Shortly after admitting her into hospital, her neurology consultant informed us that he believed these were in fact epileptic seizures. This was later confirmed via EEG. Subsequently we received the results of some genetics tests which had been carried out earlier in the year which revealed that she has a chromosome disorder called 5q14.3 deletion syndrome. We now know that children who suffer with this condition generally display the same symptoms as Ameli; epileptic seizures, hypotonia, global developmental delay etc. It’s not yet clear if her severe visual impairment has also been caused by the syndrome. As a result, the last few months in hospital have been spent attempting to find a treatment which would reduce or completely stop the seizures. Unfortunately her seizures have proven difficult to control and we are now trying to manage them at home with a mixture of sedation and anti-epileptic medication. Alongside this we are regularly monitoring her heart rate and oxygen-saturation levels, and she is receiving continuous oxygen via a nasal cannula.

Despite these new issues we are still hoping to create a sensory room for Ameli now that we’re home. Thank you to everyone who has supported us so far, we’re immensely grateful to you.