Why we're fundraising for FPIES

As you may or may not be aware, Leneiya (Taran's daughter and Charan's niece) was diagnosed with a rare and dangerous dietary condition called FPIES. When triggered, it causes her to have a severe allergic reaction and results in several hours of intense vomiting. Babies and children with this condition usually become very pale, floppy and lethargic after these episodes.

Symptoms of FPIES

FPIES reactions are delayed, usually occurring between 2-6 hours after exposure. Any food can be a trigger and as little as one bite can cause a severe reaction. This can lead to life-threatening complications as a result of dehydration. 

Challenges around FPIES diagnosis

Diagnosis of FPIES can be a challenge as this disorder is often mistaken for a bacterial infection (sepsis) or gastrointestinal viral illness. It is so rare that most healthcare professionals have never heard of it. There are no blood or skin tests that can confirm a diagnosis of FPIES and the diagnosis is made on the history of reactions and symptoms. Diagnosis can often be very long, causing needless suffering and stress for both parent and child.  

Prevention and Management of FPIES

Currently the only management option for prevention of FPIES reactions is to avoid the trigger food/s at all costs. It is important to check the ingredients on every food. Although it is exhausting for parents, the ingredient should usually be trialled for a week, before it can be considered as 'safe'. FPIES reactions are managed by giving fluids to maintain hydration. Where the vomiting is excessive, and the child is pale and floppy, intravenous fluids are usually needed in hospital. Around the age of 2, the trigger food is re-trialled in hospital so if there is a reaction, it can be carefully managed by healthcare professionals. Although living with FPIES can be mentally exhausting and challenging, thankfully many children will outgrow the condition by the age of 5. 

The Challenge

Taran - When my daughter had her first FPIES reaction, it was a confusing time for us. We were concerned as to what was causing her sickness and couldn’t get a diagnosis from the GP due to FPIES being a rare allergy. By completing this challenging hike, I am hoping to raise awareness for this charity.

Charan - Other than simply loving a challenge, I'm climbing Scafell Pike to raise awareness for my niece's condition. I'm hoping to make her, and her amazing mother proud! Me and the boys will be sharing a drink with her dad at the very top of the mountain, let's go!

Jag - Scafell Pike lets do it right! As an avid challenge seeker I relish the opportunity to tackle yet another 'mountainous' challenge such as this climb. Couple that with bringing awareness to a charitable cause, in my view, we have a winner. I have a greater personal interest in this particular event as my niece was unfortunately diagnosed with FPIES, a rare condition which causes severe allergic reactions with intense vomiting. My goal is to raise awareness for FPIES, while leading by example in showing my daughter the importance of standing strong with our family.

Kiran - There are a few reasons why I'm going to crawl up Scafell Pike - one of which is my kids. I want to show them that sometimes it is good to go outside of your comfort zone and to challenge yourself physically and mentally. I want them to see me trying new things, so they are comfortable to do the same in life.