My Fireman’s journey with Fanconi Anemia from birth. By Gidion’s mom

My son Gidion was diagnosed with #FanconiAnemia (#FA) at birth,

a very rare genetic disorder causing fatal bone marrow failure. He came into the world screaming at a staggering weight of 1kg. From the first moment he took his breath, he started to fight for his life. But before I tell you about Gidis’ condition, let me tell you about HIM. He’s 9 years old by the grace of God, is besotted with Fire Engines, Fire Fighters, Ambulances, Policemen and Helicopters.


Yes, his little world revolves around an enormous collection of cars and trucks which amuse him for hours on end as he rushes around the house in his Ambulance outfit or Fireman’s hat. His dream (since he was 2) is to become a fireman. He loves sports when he’s allowed to play (in cautious moderation) and although he is aware that he has a fatal disease, he’s completely oblivious to it and lives every day to the maximum with his trusty sidekick (his cat Zazu).


To every possible intent, he’s a normal little 9 yearold boy who goes to school,

dislikes homework and chores. Back to the disorder…Our bone marrow is responsible for the production of all our blood cells – red blood cells that carry oxygen, platelets that regulate blood clotting and all our immune cells. This means that Gidion has a deficit in all these areas affecting his health in so many ways. He also has impaired hearing and deformed thumbs. The biggest risk for mortality in children with FA is leukemia, which is bone marrow cancer. Since he was 6, he was put on section 21 medication (androgenic steroids) that we imported to stimulate his bone marrow function.

The steroids in itself has severe side effects, like dumping our angelchild of 6 years in a hormonal state and development of a 17year old male. But the steroids did work for a few years. In January 2018, Gidion complained about a severe headache (he never complains or cries), which turned out to be a brain bleed. He was not supposed to survive this, because his low platelet count should’ve caused him to bleed to death. But Gidion is the most amazing, bravest and joyful child you will ever meet. He beat all the odds with God’s grace and didn’t have any complications. We have now reached the point where the medication is no longer working.


His haemog lobin and platelets are so low, that is he dependent on weekly blood and platelet transfusions. Due to the low counts, he is pre-leukemic. He has had countless hospital admissions, been stabbed with a needle more times than I can count and he still endures everything with his signature thumbs up. We consulted with a FA specialist and he said that the solution is simple, Gidion needs a bone marrow transplant. Due to the fragility of the FA children and the fact that their DNA cannot repair, a normal bone marrow transplant is not possible they don’t survive. Hence, he needs to go to one of the specialist FA centres abroad, of which there is only four in the world, for a transplant.


But the amount of money we need to raise is a staggering amount of money. An estimate of $500 000 as given, and we are waiting for the formal quotation which would be sent this week. We are trying all avenues to raise funds radio, tv, auctions etc. But we are fighting against time since Gidion is deteriorating and needs to go to the US as soon as a donor is found. I have attached a youtube video link showing Gidi with his friends who arranged a special day for him for his birthday. https://www.dropbox.com/referrer_cleansing_redirect?hmac=lIZEoZ7VZ8E30rE04mYM6nsrJ9YFVZpIVCjMz1X7tG8%3D&url=https%3A%2F%2Fyoutu.be%2FsxTx4SO53ds

3 views0 comments

SUBSCRIBE TO OUR NEWSLETTER

FOLLOW US

  • Facebook
  • Twitter
  • YouTube
  • Instagram
  • LinkedIn

PHYSICAL ADDRESS
Block 7, Ground Floor, Stratford Office Park, Valley Road, Broadacres 2021

 

POSTAL ADDRESS
Suite 135, Private Bag X43, Sunninghill, 2157

TELEPHONE  +27 72 476 7552

EMAIL ADDRESS hello@rarediseases.co.za

© 2023 by Rare Diseases South Africa NPC.