Story about Gaucher Disease .

My story

May 19, 2017


My Story…
I started my journey as a Gaucher Type 1 patient at the age of 4. Being diagnosed at this age, I was also in the first group that received the medication in South Africa. With the help of Dr Rene Heitner, I was very fortunate to meet fellow “sick children” and I am still in contact with some of them till this day. The clinic started in 1991 and I received medication for the first time at the age of 7. If it weren’t for
the 2-monthly clinic visitations in Johannesburg I would not have been able to cope so well with my disease. There was an opportunity for the other patients and me to share our difficulties with each other.

I went through primary school normally, flying from Cape Town to Johannesburg on a bimonthly basis to receive my treatment at the Johannesburg General Hospital. In grade 8 I had the opportunity to play for the U.16 C Hockey team as left link. From there my hockey career kicked off.
I then made it through to the U.16 A-team before the end of the first hockey season. The following 2 years I played for the U.18 B-team and I was also chosen to be the captain of the team. I was a back-up player for the U.18 A-team too. In grade 11 they picked me to play for the A-team.
It was hard work, but great fun. I had an active teen life, full of fun and “normal” teen things to do.

After school I had the opportunity to work in the United Kingdom for about a year. I was employed at Christies Care where I was a caregiver to the elderly working in the south of the island as well in Canterbury. I had the time of my life. Seeing new things, places and faces it gave me the strength to move forward. I really have a lot to be grateful for. There is nothing wrong with me on the exterior, but inside my body, is where I ache.

My goal in life is to live it to the fullest. I never look back, only forward. Things will only get better, and nothing lasts forever. I keep my
chin up, and smile. All thanks to my Lord and Savior for my every day blessings.

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