A family from Co Armagh are seeking to transform the life of their five-year-old daughter in helping her to reach ‘Food Freedom’ with a world-leading Food Allergy Institute in California.
Unlike most five-year-old children, Lola Jones lives by a heavily restricted and tightly monitored diet. She suffers from several life-threatening allergies – including other atopic diseases such as eczema, asthma and hayfever, whereby even the smallest contact with an allergen could cause her to experience a fatal reaction.
Her allergies were first noticed by mum, Emily when Lola was just six months old.
Speaking to Armagh I Emily described this first reaction: “It was when she had formula for the first time. She reacted really badly, all hives, bright red body, screaming, crying.”
Lola ended up being admitted to hospital where her parents were advised to keep her off dairy products for the foreseeable.
However – as all parents will know – children get into everything and as an infant, Lola was no different.
Emily continued: “She burst open a McDonald’s milk sachet one time and a speck of milk hit her lip and she burst out in hives all over her face. The dietician told us at that point not to wean her with any diary, eggs, nuts, nothing because the chances were she would be allergic to those too. We found out around her first birthday that she was severely allergic to all of those things.
Lola (left) during a hospital stay and after touching a drip of formula as an infant (right)
“There are some other things she has never had because they haven’t been able to test her yet. Things like fish for example. They are only testing her once every two to three years to see if it’s improved or gotten worse.
“She eats a very, very healthy diet. A lot of fruit, veg, meats, pasta. We have to be careful because some pastas contain egg so we are always looking out for warnings. Everything has to be properly checked and we have to make sure there’s no risk of contamination or cross-contamination.”
And because of the risk of cross-contamination, the whole family consume a ‘free from’ diet with restaurants and takeaways being an absolute no-go.
“Everyone in the home eats what she eats. We can’t have stuff in the house that could cause a reaction,” Emily said.
Lola is not just limited in diet. Her eczema has been described by doctors as ‘some of the worst they have seen in Northern Ireland’ and, as such, it prevents the sport-loving Lola from participating in many of her favourite pastimes including physical activities with her friends at home and at school.
Said Emily: “We are actually homeschooling her at the minute just because of her health. School can try very hard but they can’t guarantee that she wouldn’t be exposed. It’s just too risky. Especially with milk.”
Eczema also restricts Lola’s ability to be further tested for food allergies. Emily explained: “Because she’s so small and her skin is really, really bad there’s never enough skin to actually test.
“It’s just big hacks all over her hands and fingers, constantly bleeding.
“Outwardly to people it looks like she just sails by and it’s not an issue but she definitely struggles with it. Especially when people draw attention to it. She just puts her head down. But she’s very resilient and very smart. She knows if someone offers her something she will say ‘no I can’t have that. I have allergies.'”
The painful eczema Lola lives with on her hands and fingers
Lola faces daily challenges ranging from the obvious hospital appointments, blood tests, medicines, restricted diet and having to carry her EpiPens everywhere to less obvious – but no less demanding struggles – that come with feeling excluded from activities, having to wear gloves to cover her broken and bleeding skin, sleeping with bandages on her arms and legs, waking multiple times throughout the night, seeing treats or food and knowing she can’t have it, not being able to hold hands or receive kisses from others due to risk of a reaction and the mental exhaustion from always being on alert, making sure she doesn’t touch, inhale or eat any allergens.
Desperate to liberate Lola from the ‘free from’ lifestyle, her parents began researching and found a ground-breaking institute in California which seemed to be the golden ticket they all needed.
Founded by leading clinical academic scientist, Dr. Inderpal Randhawa, The Food Allergy Institute promises to provide families with ‘a highly effective food allergy treatment option for children and young adults, including those with severe and complex cases’.
Most importantly for the Jones’ its Tolerance Induction Program (TIP), avows to create ‘a world without food allergy limitations’.
Emily said: “It’s like the only place in the world doing this. They have a 99% success rate at putting allergies into remission so that kids can live a life of food freedom. They have patients flying in from all over the world.
“The other thing is, it’s not just for her allergies because eczema and asthma are all linked to the immune system so by actually treating her allergies it can improve kids’ skin and asthma.”
Lola’s parents, CJ and Emily have now launched an ambitious fundraising effort in the hopes of getting her enrolled in this potentially life-changing – but costly – programme.
Lola will need to travel to California approximately four times a year (for up to four years) for various food challenges and treatment, as well as, initial robust testing so that they can come up with her plan.
Once there, Lola will stay for a few days to be introduced to foods with similar proteins in a controlled environment. She will then be presented with a strict treatment plan to follow at home between visits. This will continue in a progressive manner for a period of months or years until her immune system learns not to react and she has reached a place of ‘food freedom’.
The family are hoping to raise funds for treatment by selling unique t-shirts, which have also been designed to raise awareness of numerous conditions, diseases and disorders.
They have also set up a fundraising page which – at the time of writing – has raised over £2,000 of their £15,000 target.
Of the difference treatment would make to Lola’s life, Emily said: “It would be life-changing for her and for the whole family. We would be able to do things together that everyone else takes for granted. Going out to a soft play area without worrying about her coming into contact with something. Going out to eat as a family. We always have to bring an air fryer with us or prepare something ahead of time if we go somewhere!
“We know the mental toll and exhaustion these often invisible conditions can have on the child, but also their parents and family. We are always reminded that each person is wonderfully made and want others to embrace that mindset as well.”
You can make a donation to ‘Lola’s Journey to Food Freedom’ via the Go Get Funding page here.
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