Fundraise For Franki’s Intensive therapy

Product Description

Perth, Western Australia, Australia

Supporters

We welcomed Franki, our second son, on Mother’s day, 2016. Shortly after delivery, we were shocked to discover that he was born with several birth abnormalities. The most noticeable and concerning to his Pediatrician and us, was his Sagittal Craniosynostosis.

Craniosynostosis is a birth defect that consists of premature fusion of 1 or more cranial sutures, resulting in an abnormal head shape. Franki’s head was long and cone shaped at the back and resembled that of a boat. Franki had corrective surgery at 3.5 months of age and again at 8.5 months of age to his skull – but despite these efforts, it appears that Franki’s skull is not growing at the rate proportionate to his age – this is known as microcephaly, a result of the brain not growing adequately in size as is deemed normal for his age. The reason for this is still unknown and more than likely genetically linked.

Fast forward 17 months, and Franki now has considerable special needs. At 7.5 months of age he was formally diagnosed with Global Developmental Delay, Cerebral Vision Impairment (CVI), mild hearing loss and mild dystonia – a muscle movement disorder and more recently with seizures which he is now medicated for.

On November 21st 2017, we received Franki’s diagnosis! Franki has a gene duplication in his 8th chromosome, affecting the KAT6A gene, causing what is now known as the super rare KAT6A Syndrome. So rare, its ccurence rate is just 1in a million, with only 107 world wide reported cases… Franki is the 107th!

Today, Franki is non-verbal, has only just started to use his hands for play, learn how to weight bear with his arms and sit unassisted for small amounts of time… unfortunately Franki can not yet crawl, stand, or walk and has a long way to go and many hours of therapy to get him there! But we believe in him, and have the knowledge that it is possible for others who have the same condition as him to learn the ability to walk and communicate in some capacity.

A regular at Princess Margaret Hospital in Perth, Franki also receives his primary services from Wizetherapy, funded by WANDIS. His plan enables him to access to weekly/fortnightly physio, occupational and speech therapy. Whilst we are thankful that Franki is receiving some government assistance, it is unfortunately quite limiting – covering only what is deemed as ‘reasonable and necessary’. Knowing that Franki needs much more therapy than what mainstream therapy services can provide, we also pay for private sessions for Franki to see the amazing Physiotherapist, Triston Hunter who is the only CME Medek Method Physiotherapist in Western Australia.

We know that the early years are the most formative and as such, we have secured two blocks of intense therapy in March and September 2018 at NAPA in Sydney www.napacentre.com.au completing 3 hours of therapy, 5 days a week for 3 weeks, totaling 45 hours! Each intensive program will cost just under $10,000 – not including flights, accommodation, and car hire whilst in a Sydney and will squish 6 months worth of therapeutical gains into a short 3 week time period.

As Franki’s parents, we are his strongest advocates and strongly believe that he is capable of so much given the right opportunities in life, and this is what we aim to do. No matter the size of the donation $5, $25 or $50, it all counts and will go a long way to giving Franki the best opportunities in life. Donations of any amount are so very appreciated with all funds going directly towards progressing his development.

From our family to yours, thank you doesn’t even begin to extend our gratitude for your contribution!

xxx

The Moura Family

Iris Mira

5 years ago

$160

Bridget Odongo

7 years ago

$10

Vaughan Paternoster

7 years ago

$25

Dave & Kerry Tawhai

7 years ago

$25

Paul Klynnyk

7 years ago

$50

Georgina Budgen

7 years ago

$50

Emily Dunne

7 years ago

$10

Anonymous

7 years ago

$50

Anonymous

7 years ago

$15

Anna Francesca

7 years ago

$100

Victoria James

7 years ago

$50

Renee Cumace

7 years ago

$100

Daniel Pereira

7 years ago

$50

Belinda De Gennaro

7 years ago

$50

Anonymous

7 years ago

$25

Shaun Gibson

7 years ago

$50

Shayne & Daniela Bull

7 years ago

$175

Caitlyn Kelly

7 years ago

$50

Jade Pengilly

8 years ago

$10

Sharon Rainford

8 years ago

$50

Bridget Odongo

I really do hope that the little guy gets all the love and care he needs to make his life a little bit easier. I truly wish you the best of luck xx

7 years ago

Paul Klynnyk

Hi Fernando and Vera. All the best with Frankies campaign.

7 years ago

Renee Cumace

More than happy to donate to Beautiful Franki, so glad to have met you! I hope you reach your amount for therapy!

7 years ago

Lana De Palma

Onwards and upwards xx

8 years ago

Sonia Soares

Please take a moment to read Franki’s story! This beautiful boy is my cousin’s little boy and he and his family need your support!

8 years ago

Katy Moore

Vera, I had no idea this had happened to Franki. Thank you for sharing his story- you inspire me with your passion and determination (it’s no wonder he’s a fighter too!). All the best, I’ll be thinking and praying for you all xx

8 years ago

Tania Lukas Teague

We love you so much our brave Godson xoxo

8 years ago

Ben Lake

Good luck Franki. Having a complicated birth of our own son, means I know how you loving parents must be feeling. Stay strong.

8 years ago

Ana Da Silva

Get better soon little man!!❤️❤️

8 years ago

Vera Moura