Help give Niko back a good quality of life

Hi my name is Lea, my son Niko is 4 years old and is autistic.

Niko has suffered from severe food adversion his whole life, this means he cannot tolerate almost all foods and has an extreme fear response to textures, colours, smells and the sight of foods other than his extremely limited safe foods.

In December 2023 Niko bit into a chocolate bar, he instantly vomitted due to the unexpected texture inside, he then went into a 4 month period of refusing all food for 4 months and only having apple juice , he lost a lot of weight, becoming lethargic and being admitted to hospital on numerous occasions with dangerously low blood sugar and dehydration but nhs consultants didn’t intervene and he was left without any nutrition.

Fast forward to todays date, Niko only has one certain type of biscuit and the occasional handful of hoola hoops crisps, apple juice and skimmed milk as his entire food/fluid intake.

He cannot tolerate taking oral medication that is prescribed to him nor any type of medication needed when unwell, therefore leading to further hospital admissions.

Niko cannot eat in unfamiliar environments, busy places or when his routine is disrupted, this is having an extreme impact on his quality of life and the quality of life for our entire family, we can no longer safely take Niko on holiday, weekends away or days out.

He is missing vital school time, his attendance currently standing at around 62%.

Niko needs a PEG feeding tube so we are able to give him the nutrients and medication he so desperately needs to live a fulfilled life without this huge barrier.

Unfortunately the NHS consultants are unwilling to do this procedure untill Niko becomes so clinically unwell it becomes a medical emergency, despite concerns raised by Niko’s dietitian and feeding specialist from the SLT team , I believe this is wrong and preventable, no child should suffer unnecessarily.

I am now raising funds to go private so that Niko can get the procedure he so desperately needs to get well and live a fulfilled and happy life.

A private consultant surgeon is happy to help but obviously this comes with a large price tag, any help would be greatly appreciated.

No child should be left to survive off the bare minimum untill their body can no longer cope and is in crisis , it is inhumane and cruel.

please help me to help my child.

thank you for reading

Lea x