Peaches' Story

Peaches is 22 years old and has had a gastrostomy tube for the past 15 years. Sharon, Peaches mum explains how the team at Nutricia Homeward provide ongoing, regular support to help enhance Peaches quality of life.

Peaches loves music, shapes, and colours, but mainly enjoys being with people. She is particularly fascinated with balls as these help her to interact with others.

She was diagnosed with epilepsy at just 4 months old and a scan showed over 250 lesions in her brain. It's thought the epilepsy had started during pregnancy and by the time she was born the damage was irreparable. Peaches has what is classed as an undiagnosed neurological disorder; this diagnosis helps because no assumptions are ever made, she is treated as an individual and we adapt to her needs.

Peaches can't stand and is non- verbal, she has been given numerous life expectancies and we don't have a prognosis however I think that's positive as if you have a day in mind you will work towards that day as opposed to over it. Her life expectancy started as “she won't make it past pre-school” and it carries on like that, she's now in her twenties.

Peaches stopped feeding orally when she was 7 and initially had an NG tube placed eventually moving to a gastrostomy feeding tube.

I wasn't given much information before the gastrostomy tube was placed and it took me several weeks to feel confident managing it alone.

Her gastrostomy tube is now the most important thing for her wellbeing, and she is 100% dependent on it. She doesn't take anything orally anymore and uses this for medication, hydration, and food.

The Nutricia Homeward Service is the one thing in Peaches life regarding her medical care that I know will be dealt with in the most professional, supportive, kind, and considerate manner.

All aspects of Peaches wellbeing are now dependent on her gastrostomy and because it is managed by Nutricia Homeward it gives me 100% confidence that should anything go wrong it will be dealt with speed, empathy, and care. I can't really put into words how that feels. It is like having a safety net when walking a tight rope.

The biggest thing for me was watching Sarah, our Nutricia Homeward Nurse do a button change for Peaches for the first time. I couldn't have been more delighted.

Prior to Nutricia, I never used to feel calm when there was a button change or a medical intervention. It used to take 2-3 hours and then take another couple of hours to calm Peaches down as it was so traumatic for her. With Sarah, it is done with a huge amount of attention, care, and empathy and under 5 minutes.

Since day one, Sarah has had an amazing ability to engage with Peaches. Although Peaches can't respond, Sarah talks to her and this has built a big level of trust between them. Sarah's approach to me and her approach to other members of our family has been fantastic.

The patient coordinators are superb, they always phone or email me and tell me what is on her monthly delivery list. They give me a date for delivery and there has never been a delivery that hasn't been exactly what's on the list.

Nutricia Homeward delivery drivers in my view, are kind, considerate and courteous. If I can't answer the door, they cover it all up in case there are weather issues, and always send a text message to say it is delivered. Their courtesy is exceptional and what makes them stand out for me is their high levels of empathy.

I would advise others to talk to your Nutricia Homeward Nurse about any concerns you may have, especially if you are new to tube feeding. They are a specialist service and are there to help you so embrace the service and ask all the questions you need. There is absolutely nothing I wouldn't ask Sarah our Nutricia Homeward nurse.

My hope for Peaches is to prolong her life and quality of life, she was never expected to reach her twenties and we do our utmost to prolong and enhance her life, through medications, physiotherapy, etc.

I am grateful every morning that Peaches is here so that makes me then even more grateful for the people that support me. Sometimes I have days when I am worried but then I remember I have the right people to help and support us.

The Nutricia Homeward team are like a blanket around us, together, we can't do anything to improve Peaches condition, but we can improve her quality of life.