Travelling with the B E A R

Travelling with the B E A R Family of 5, breaking limitations.Travelling with 35+ allergies, CID, Neuro diversities and more. Our son has a very rare Genetic condition BCL11B

EosinophilicEsophagitis EoEAwareness Dupixent Dupilumab Biologics PatientAdvocacy MedicalMom FightForYourChild...
04/09/2026

EosinophilicEsophagitis EoEAwareness Dupixent Dupilumab Biologics PatientAdvocacy MedicalMom FightForYourChild Dysphagia FeedingDisorder FoodAversion

🎒 Back to school looks a little different for allergy families.For us, it’s the same classroom, but new children and fam...
03/09/2026

🎒 Back to school looks a little different for allergy families.

For us, it’s the same classroom, but new children and families joining us.

And this year, something felt different. ❤️

While the BEAR was doing his transition, I sat in the parent meet & greet and felt something I’m not used to…

Support.

Parents who already know the BEAR.
Who understand his allergies.
Who know how to help keep him safe.

They joined in the conversations, asked questions and helped advocate for him.

And for once, I wasn’t advocating alone. 🥹

His teachers have been amazing too — positive, reassuring and taking his allergies seriously.

The Benedict Blythe Law has helped move allergy awareness and emergency preparedness forward, but sometimes it’s the people around you who make the biggest difference.

Here’s to a school year where our allergy kids are safe, included and understood. ❤️

Anaphylaxis BenedictBlytheLaw AllergySafe SEND InvisibleDisability

I’m sorry life will become difficult. Your little brother will bring so much love into our family, but his rare genetic ...
01/09/2026

I’m sorry life will become difficult. Your little brother will bring so much love into our family, but his rare genetic condition, BCL11B-related disorder, will change our lives.

There will be hospital appointments, therapies, emergencies and worries. His needs will often come first, and you’ll become young carers without choosing to.

You’ll learn patience, compassion and strength—but sometimes grow up faster than we wanted.

I’m so sorry for what you’ve missed out on. 💔

But I am also unbelievably proud of you both.

Now 11 and 13, you are loving sisters and daughters with huge hearts. You notice when others need kindness, and you have shown your brother so much love.

I see everything you do, everything you’ve given up, and the incredible young women you’re becoming.

You didn’t choose to become young carers, but you’ve shown a strength, love and empathy that makes me prouder than words can say.

Please remember:

You are allowed to be children too.
You are allowed to have your own lives.
You are allowed to need us.
You will always be just as important.

Mummy loves you both more than you’ll ever know. ❤️

To all young carers and their families: I see you. Behind the caring, they are still children who deserve support, kindness and space to be themselves. đź’—

SENDCommunity RareDisease RareDiseaseFamily RareGeneticDisease BCL11B BCL11BRelatedDisorder AutismFamily NeurodivergentFamily InvisibleDisability DisabilityAwareness CarersSupport FamilyLife SiblingLove Siblings ParentingWithDisability

“ANY INFECTION NEEDS TO BE TREATED URGENTLY.” 🚨That’s the advice we’re given when your child has combined immunodeficien...
30/08/2026

“ANY INFECTION NEEDS TO BE TREATED URGENTLY.” 🚨

That’s the advice we’re given when your child has combined immunodeficiency (CID).

The risk of serious infection, sepsis and pneumonia is higher — and for our BEAR, these infections can become life-threatening.

So… we acted urgently.

Reality:

💊 Pharmacist: “Yes, we can treat skin infections, but not your son because he has CID.”

Us: “But he needs more urgent care?”

“Yeah… we aren’t allowed to.”

đź“ž 111: Triage. Video call. A few hours pass.
“Yes, we’ll send antibiotics to a pharmacy that’s open today.”

🏥 Pharmacy: Not local, because it’s a bank holiday Sunday and there’s no normal Sunday service.
One-hour wait.

We wait an hour.

“We don’t have any.”

Try Boots in town.

đź“ž Boots: No answer.

đźš— Park. Walk in.

“No, we don’t have any. Try somewhere else.”

🏪 Somewhere else?

Closed.

đź“ž Call the hospital.

“Yes, we have it. What colour is your prescription?”

Us: “White.”

“Yeah, we can’t help.”

🤯

đź“ž Finally, call the open-access hospital ward.

“We may be able to help. We’ll try and get a doctor to vet it.”

“Oh, and the pharmacy is now shut because it’s the bank holiday weekend.”

So now we wait for a call back.

TEN HOURS.

Ten hours of managing an autistic child who is already struggling, while trying to navigate a system that tells us infections need urgent treatment because of his CID…

…but then leaves us spending the entire day trying to actually access that treatment.

This isn't what “urgent” feels like.

This is exhausting.

And for families like ours, urgent care shouldn't depend on how many pharmacies you can drive to, how long you can wait, or whether someone happens to have the right antibiotic in stock.

We are doing everything we're told.

But the system needs to work too. đź’”

AutismParenting MedicalMum ComplexNeeds RareDisease SepsisAwareness SENFamily DisabilitySupport InvisibleDisability SpecialNeedsParenting

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