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

💜 BCL11B — one tiny gene, a very big impact.This is our BEAR. 🐻💜Behind this happy face is a rare genetic condition calle...
09/09/2026

💜 BCL11B — one tiny gene, a very big impact.

This is our BEAR. 🐻💜

Behind this happy face is a rare genetic condition called BCL11B-related disorder — something most people have never heard of.

BCL11B can affect so many different parts of a child’s life.
For us, that means immune system differences, neurodevelopmental differences, autism, learning disability, severe allergies, behavioural challenges, sensory processing difficulties, feeding difficulties, respiratory issues and so much more.

We were told it is ultra-rare, with only a small number of diagnosed children worldwide. That means research, awareness and understanding really matter. 💜
So this is us putting BCL11B on the map — one post, one conversation and one little BEAR at a time. 🐻🌈
If you've never heard of BCL11B before, please share this post. You never know who might need to find it. 💜
RareGeneticDisorder SEND SENDMum Autism Allergies Immunodeficiency LearningDisability Neurodiversity RareDiseaseCommunity TheBEAR

I’m tired.Not just tired from lack of sleep.Tired of fighting.Tired of chasing.Tired of explaining the same things over ...
09/09/2026

I’m tired.

Not just tired from lack of sleep.

Tired of fighting.
Tired of chasing.
Tired of explaining the same things over and over again.
Tired of having to fight for things my child should have without me having to beg for them.

So today, I stopped.

Put the phone down. 📱
Closed the laptop. 💻
Said no to the meetings and appointments.

And met some SEN mums for coffee. ☕️🤍

No EHCPs.
No battles.
No explaining.

Just coffee, laughter, a rant or two and people who get it.

For two hours, I put it all down.

Then this afternoon, I’ll pick it all back up and start again.

Because the fight doesn’t stop.

But for two hours today, neither did I. 🤍

SpecialNeedsParenting YouAreNotAlone

🚨 Let’s stop calling SEND advocacy “shouting”.There’s a huge difference between a parent demanding special treatment and...
08/09/2026

🚨 Let’s stop calling SEND advocacy “shouting”.

There’s a huge difference between a parent demanding special treatment and a parent refusing to give up when their disabled child’s needs are being overlooked.

We’re not trying to “get what we want”.

We’re trying to get our children what they need. ❤️
And sometimes that means asking again.
Challenging a decision.
Providing more evidence.
Having the difficult conversations.
And yes… being persistent.

Because if we stop advocating, who makes sure our children aren’t the ones left behind?

SEND parents — what’s the phrase you’ve been told that sounds reasonable, but actually undermines your child’s needs?

Drop it below. 👇

Let’s start calling these phrases out.
DisabilityRights EHCP ReasonableAdjustments AdditionalNeeds Neurodiversity SpecialEducationalNeeds StopTheGaslighting

06/09/2026

🌈 Guess what the BEAR’s favourite colour is?

Rainbow. 🌈

Because why would you choose just one colour when you can have them all? 🥰

And honestly, he absolutely LOVES rainbows.

But what I love even more is listening to him talk about them.

Being able to ask him questions.
Hear his answers.
Have little conversations.
Listen to his thoughts and opinions. 🥹❤️

When the BEAR started at his current school, he could only put three words together.

Now, as he heads into his final year at this school, we are watching him absolutely THRIVE.

Being given a place in a specialist SEN unit that understands communication and autism has been incredible.

And we also fought hard to secure private Speech and Language Therapy (SaLT) provision in his EHCP, taking it all the way through a tribunal battle.

It wasn't easy.

But we did it because he needed it.

And look at him now. 🥹

This is why we advocate.

This is why we keep pushing.

This is why we don't give up when we're told something can't be done.

Because sometimes, it can be done.

And if you're a SEND parent fighting for the support your child needs, I want you to know:

You are not asking for too much.
Your child deserves the help they need.
And sometimes, you have to fight incredibly hard to get it.

The difference between the little boy who walked through those school doors and the BEAR we see today is just incredible.

We are so, so proud of you, BEAR. 🐻❤️

And of course…

🌈 Rainbow will always be the best colour. 🌈

SEN EHCP SENDParent SpeechAndLanguageTherapy SaLT CommunicationMatters SpecialNeeds NeurodivergentKids SENDAdvocacy ProudMum RainbowI particularly like “You are not asking for too much” here — that could really resonate with other SEND parents.

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. 💗

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.”

📞 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.

📞 Boots: No answer.

🚗 Park. Walk in.

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

🏪 Somewhere else?

Closed.

📞 Call the hospital.

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

Us: “White.”

“Yeah, we can’t help.”

🤯

📞 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. 💔

AutismParenting MedicalMum ComplexNeeds RareDisease SepsisAwareness SENFamily DisabilitySupport InvisibleDisability SpecialNeedsParenting

Address

Lowestoft Road, Gorleston
Gorleston-on-Sea
NR31 6LA

Website

Alerts

Be the first to know and let us send you an email when Travelling with the B E A R posts news and promotions. Your email address will not be used for any other purpose, and you can unsubscribe at any time.

Shortcuts

Share

Category