Not long after Ricky’s arrival he began to have seizures and in August, Ricky was diagnosed with a rare genetic condition named Cyclin-Dependent Kinase-Like 5 (CDKL5).
CDKL5 is caused by mutations in the CDKL5 gene, which is found on the X-chromosome. Due to the location of the gene, this disorder mainly affects girls. This makes Ricky incredibly unique. The cause of a CDKL5 mutation is not known at this time.
Ricky, now 5 months, is constantly changing. He is onto his 5th different type of medication and the seizures are still a daily occurrence. As much as we can research about his condition we are still unknown as to what he will be able to do and when. We are all incredibly optimistic of this strong, brave and very chatty little babyboy. However, we are not naive about what his needs currently are and will be in the future.
Ricky will need to visit a range of specialists in these first few months and years of his life. He will require professional assistance such as physiotherapist, orthopaedic, physical therapy, speech therapy, Hydrotherapy, occupational therapy, and music therapy just to name a few. Not to mention the on-going medical expenses and equipment.
We want Ricky to receive the best care he needs as he develops into a handsome young man. However, these specialist cost money so Ricky needs your help.
Our goal is to firstly give Ricky the necessary funds to pay for some of these specialist. To do this we need your help.
Please donate to this beautiful boy and his on-going development with CDKL5. All that we ask from you is a small donation or simply have a conversation about this condition. Your donations can help this beautiful family spend more quality time together without the financial burden.
This page is for the on-going support of Ricky as well as a way to spread awareness of this very rare condition. We hope you have learnt a little more about Ricky’s condition and will help us spread the word. Thank you for taking the time to read Ricky’s story.
Ricky’s parents have been overwhelmed with the support they have received and thank everyone for their kindness and generosity.
If you would like to know more about Ricky’s condition visit; www.cdkl5.com
DonationsSee top donations
- Cameron Wilson
- Emma Blumke
- Leone Power
- Bradley Mercer
- The kids from 4BL at Salisbury State School
Fundraising team: Ricky Macrae (4)
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