Meet Omar, our beautiful 3 year old son. He is a happy little boy, with a mischievous personality which never fails to make us and others smile.

Omar was born with no complications and always appeared healthy. However, we noticed quite soon that there was a delay in him meeting his milestones. As a parent, you are always reassured that all children are different and develop at their own pace and one should never compare! We hoped and prayed that Omar would eventually catch up with his peers. Unfortunately, Omar made little or no progress in reaching key milestones and so, after his first birthday, we underwent invasive testing in order to investigate the cause of Omar's developmental delay.

After a number of tests and no clarity in why Omar was so behind his peers in certain milestones, in December 2019 he was diagnosed with a rare condition called Spino Cerebellar Ataxia type 5. This diagnosis changed our lives forever. This disease impacts all aspects of development from mobility to speech. However cognitively they're bright. The best I can describe it, is a regular functioning mind that is trapped in a body that doesn't match.

This condition is extremely rare with many variations. The reality of the situation is that due to its rarity there are several unknowns and little research as to the condition. We have been advised that there is no medical cure at present but consistent therapies are vital for Omar in order to aid and assist him in his development. 

It has taken time to accept the diagnosis. We have tried to explore and research the condition as much as possible and it is now our aim to ensure that we do all that we can to ensure that Omar has the best chance at living a normal life as possible and maximising his quality of life.

Through my research I have reached out to several families who have all been in our position and the advice has been, "therapy, therapy, therapy!!!"

Omar currently has Physical Therapy, Occupational Therapy and Speech and Language Therapy. As we live in the United States, our medical insurance will only cover one hour a week of each of the therapies. There are private therapy clinics that offer intensive programs to help children diagnosed with developmental conditions to excel. The private clinics offer a 3 hour a day plan working with Omar 5 days a week over several months.

As parents, we of course want Omar to undergo the therapy for three months to promote his independence and quality of life. Omar currently uses a walker but isn't able to walk independently. This makes basic tasks, which you and I take for granted, extremely difficult. Things like going to the bathroom, using the stairs and general mobility are impossible. Omar is a bright little boy, full of motivation and curiosity. As parents, we want Omar to be given the opportunity to progress as far as possible. 

We believe that with your help and the grace of God, he will get there! With your donations, this therapy may change his future and we are hopeful that one day we will see our little one walk independently and participate with day to day activities with his peers at school and in social settings.

We thank you in advance for taking the time to read a short glimpse of our struggle and ask that you please keep Omar in your prayers.