Lola’s Journey to Food Freedom

Lola suffers from life-threatening allergies, as well as other atopic diseases (severe eczema, asthma and hayfever). Please help us on our journey for Lola to reach Food Freedom and decrease the severity of other atopic diseases along the way as we enrol her at the Food Allergy Institute in California.

We are doing everything we can to give Lola the life of freedom she deserves and would appreciate anyone who wants to donate or attend any of our upcoming events. We have initially set the target for Year 1 of the programme as we will find out at a later stage how much we will need in total (it will depend on her treatment plan and number of visits needed). Read below for more information on Lola's story.

95% of people who know Lola will know her as the bubbly, outgoing, sporty, smart, cute, funny and kind child, who adores her siblings, friends and sports. Very few people will know the struggles she faces on a daily basis - the numerous hospital appointments, blood tests, medicines, restricted diet, feeling excluded from activities, carrying her epipens everywhere, feeling alone when she can't eat what others can, having to wear gloves to cover her broken and bleeding skin, sleeping with bandages on her arms and legs, waking up multiple times throughout the night, seeing treats or food anywhere and knowing she can't have it, not being able to hold hands or receive kisses from others due to risk of a reaction, the mental exhaustion from her always being on alert to make sure she doesn't touch, inhale or eat any of her allergens. Sometimes it's all too much for her to handle and she gets overwhelmed, but majority of the time she continues to be the resilient, strong and brave child that she is. We have to remind ourselves she's only 5 but is so on top of things, having to deal with things many kids and adults would never even have to think of.

Lola was born with life threatening food allergies. These became apparent around 6 months old when she had formula for the first time and had a really bad reaction that put her in hospital (with more to follow). At the age of 1, tests confirmed she was anaphylactic to cows milk (which includes any product that contains it), eggs, peanuts and all tree nuts (almonds, cashews, hazelnut, pistachios etc) which would mean carrying epipens everywhere she goes for the rest of her life. This diagnosis turned our lives upside down as every single moment of every day, we have to be so careful that Lola doesn't touch, eat or inhale any of her allergens, as the result could be deadly. She is also allergic to grass, pollen and dust, which in turn triggers her asthma.

She was born with eczema, which has progressed in severity the older she has got. She has been admitted to hospital on multiples occasions for life threatening skin infections and regularly attends the Royal Hospital for Sick Children.

Lola is resilient, brave and strong, she never gives up and never allows her conditions to stop her (until she physically cannot do things because of the pain or something is too dangerous for her to take part in). She is very active, she loves her sports (soccer, tennis, futsal and basketball) and over the last year in particular, she has often missed out because of her body. Sometimes she can not walk, hold a fork, get on the toilet or hold a pencil, never mind do the things she absolutely loves. This absolutely breaks our hearts as she is so clever, kind, outgoing and a lover of people and sports. When she grows up she wants to be a tennis player, footballer and then an allergy doctor.

We came across The Food Allergy Institute over a year ago and have been researching it ever since. We have spoken to many families who already have kids enrolled in the programme and who have graduated from it. We know this is the best gift we can give Lola, but it comes with a cost. Lola will need to travel to California approximately 4 times a year (for up to 4 years) for various food challenges and treatment, as well as initial robust testing so that they can come up with her plan. The success rate is 99% at putting allergies into remission so that kids can live a life of food freedom.

Lola's allergies are always on our minds, wherever we go and in whatever we do. She cannot eat food from any restaurants or takeaways, everything must be prepared at home (in a free from house), with all labels triple checked for any allergens or May contain warnings. If you've ever tried shopping for someone with allergies, you'll find there aren't too many products that don't have milk, egg or nut warnings, and most are double or triple the price. It isn't just food that needs to be checked either- a lot of toilet rolls now contain almond milk, as well as hand soaps. Abidec kids vitamins contain peanut oil and some forms of vapour rub too! Simple trips to the park, soft play, bowling etc all come with massive risks- if she were to touch a speck of nuts, milk or egg, she would have a severe reaction. We often find bits of food on the ground or equipment, as well as melted ice cream in the summer time. She wears gloves wherever she goes and knows she must not then touch her skin. As a family, we all make sacrifices necessary to keep Lola safe and ensure she can still enjoy life, but also always be prepared with epipens for the worst case scenario. Lola is currently homeschooled as it's the safest environment for her and works around her numerous hospital appointments. We hope some day she can live of freedom and as a family, we can enjoy doing "normal" things and reigniting our passion to travel, and let our kids be kids with no fear or worry.

We are selling some unique tshirts to raise awareness of numerous conditions, diseases and disorders that so many kids have. 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. All profits from the tshirts will go towards Lola's treatment. You can buy a tshirt HERE

We would appreciate any support, no matter how little or big, to help us on the journey for Lola to reach food freedom. All money raised will be used for Lola's tests, blood work, appointments and treatment plans, with any excess being used for travel etc.

Donations can also be sent directly via Paypal to [email protected] If you are having trouble making a payment online or prefer to send via a different method, please send us an email.

Thank you in advance.

The Jones'