For those of you that don’t already know her.... Meet Brooke, AKA Dinky Dot B.

B is our ray of sunshine, equally mixed with a little bit of hurricane.

Brooke was born with Achondroplasia, which is a bone growth disorder that results in dwarfism due to a genetic mutation in the arms and legs.

As William Shakespeare once wrote in ‘A Midsummer Night's Dream’, “though she be but little, she is fierce” which sums up our dinky princess just perfectly. But sometimes fierce can’t do it alone. Occasionally the mighty need a helping hand too.

Brooke is about to turn two, which is where the fight really begins as it’s now when treatment can begin. This page is set up to raise money for our little miracle girl to start on vosoritide, a daily injection that could improve her future by increasing her height and alleviating her growth-related aches and pains.

I felt my heart drop

We consider ourselves extremely blessed and lucky to have been gifted with the most beautiful, happy little girl there ever was. But deep down, there is a constant fear that financial restrictions will always mean we can never give Brooke everything she so rightly deserves.

Unfortunately, Brooke’s medical bills are not covered in the UAE, a place we have called home for more than a decade. From her daily asthma pump to a breathing machine she is hooked up to each night, not to mention all the accessories and medication needed to keep her healthy. The bomb drop......Vosoritide has an estimated cost of $300,000 a year.

Our hope is to raise enough money to get Brooke started on three months worth of treatment, while we work tirelessly to get the treatment accredited and covered under insurance.

If our goal is not achieved, the funds will be kept in Brooke's account and allocated towards various related expenses, such as her medical equipment replenishments, flights to the UK for visits to Great Ormond Street, and necessary adaptations around the house to facilitate a more “normal” daily life for her.

Nothing worth having comes easy

Our journey with Brooke has been a rollercoaster of emotion from day one. Initially riddled with guilt and sadness, we were confused and distraught.

We would spend days and nights glued to a telephone or laptop, obsessively googling our way to the answers that most appealed. For a while we kept telling ourselves the tests would come back “normal” and that she just had short legs and a slightly big head.

Understanding the condition and what it would mean for Brooke moving forward was a game-changer and ever since, she impresses us every single day.

Witnessing her smash goals, hit milestones and knock down the daily barriers she faces is, simply put, inspiring. She’s stacked with determination, has bravery in abundance and is a very special human.

The dark days

NICU is a place Brooke knows very well. Fortnight stints of no sleep, anxiety, and heart rates going through the roof every time one or more of the machines she was hooked up to, alerted staff her oxygen levels were dropping.

We can honestly say we’ve been through the ringer – there have been signed off from work, cocktails of antidepressants and therapy sessions taking up far too much space in the diary of a busy family of four. But we always said we wouldn’t be beaten. Brooke certainly hasn’t let it stop her, and we plan to do whatever it takes to make life as utterly fantastic for this little human as physically possible.

Anyone for science?

The most common type of dwarfism, achondroplasia, can now be treated with Voxzogo (vosoritide), maximizing a child’s growth potential. In November 2021, the FDA approved Vosoritide to assist with linear growth in children aged from five years old, which has now been lowered to the age of two.

Achondroplasia is a genetic condition affecting a protein in the body called the fibroblast growth factor receptor. In achondroplasia, this protein begins to function abnormally, slowing down the growth of bone in the cartilage of the growth plate. Almost all children with achondroplasia are able to live full and healthy lives after diagnosis.

Thank you to everyone that has been there to support us on Brooke’s journey so far, we appreciate and love each and every one of you.

All our love, Chris, Nic, Reece, Bailey and B xxxx