Our Journey with Rubinstein-Taybi Syndrome

Latest Articles

During my pregnancy I kept telling Abbas that I wanted to return to work after 7 months of being on mat leave. I even told my manager at that time, who is a mother of three children...

EHCP (Educational Health and Care Plan)

In our first meeting with the Speech and Language Therapist (SALT) I was asked if Aara has an EHC Plan. This was not a term I had heard before and was unsure what this was. The Therapist...

Lockdown

On Monday 23rd March 2020 the UK officially went into lockdown due to the pandemic. Aara’s grandad who lived with us, passed away on 25th March 2020, due to COVID-19. The picture below...

PECS vs HANEN

As mentioned in a previous post, we are currently working with two different speech and language therapists, one through the NHS and the second we fund privately. While they do work...

New Parent

Firstly congratulations on the birth of your child. With that being said, we have been in your position and it’s perfectly normal to grieve as you let go of how you imagined your child...

Aara's Milestones

Aara’s diagnosis has helped us to appreciate all of her achievements even though they may seem small. Every parent has concerns about when their child will walk and talk and this is...

Learn More about Us

Discover the inspiring story of our families unwavering love and resilience in the face of Rubenstein- Taybi syndrome and get to know the incredible warrior at the heart of it all our daughter.

We'D Love to hear from you

We’re here to connect, listen and support. If you have any questions, stories to share or just want to reach out please don’t hesitate to get in touch with us.