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Odin Adams Rare Disease

Odin Adams Rare Disease

Personal message

 

I am Lydon Adams from Paarl and created this campaign for my son Odin.

At just 12 months old little Odin Adams has faced many challenges.

He’s had more than five operations and weighs just 6kg – half of what he should at his age.

Odin was admitted to hospital for the first time when he was only 5 weeks old, due to not being able to keep in any milk. He has since had more than 5 surgeries, been under the care of three hospitals, seen by numerous pediatricians, dieticians, geneticists, physiotherapists…and no official diagnosis has been possible yet.

In short, Odin’s little body cannot digest fat or protein. He is in need of very expensive genetic testing to be able to be officially diagnosed, and this is very important, as there can be no plans made for his future, whilst there is no certainty about a diagnosis. Currently, he displays symptoms of both Chylomicron Retention Disease as well as Abetalipoproteinemia, but more predominantly, Chylomicron Retention Disease. Chylomicron retention disease is a rare condition with approximately 50 cases described worldwide.

Odin is doing better now. Growing slowly but we as parents will always be positive. He still only receiving his feed through tube feeding as he has a mickey in his tummy. He is still very stubborn to eat and gets physio weekly to stimulate him to start eating. Genetic testing will help in determining Odin’s specific diagnosis and management plan.

Thank you in advance for your generosity and support.

The financial burden has been crippling for us as a family. We have Medical Aid but as you know everything those not get covered. We have expenses ranging from medical to personal as budgets, credit etc. has been tapped out with this journey we on. We as parents will always strive to give our child the best.

All donations will go to the family to cover:
Medical expenses
Expenses of credit acquired last year.
Ongoing expenses for Odin blood test, doctors, medication etc.

Donations

  • Sep 11, 2019 - USD $ 71.71
  • "All the best for little Odin!" - Anonymous

  • Jul 24, 2019 - R 1 010.00
  • "God sal voorsien soos Hy nog al die pad doen.Bly biddend L&C...Baie baie lief vir jou klonkie!" - Anonymous

  • Jul 18, 2019 - R 110.00
  • "May you experience God's grace and favour on this journey as parents and may Odin be blessed beyond all your expectations" - Ms Williams

  • Jul 10, 2019 - USD $ 40.00
  • "Lord bless this family" - Debra Carolissen Warwood

  • Jun 15, 2019 - R 2 056.40
  • "Baie sterkte, ek bid dat God julle sal beskerm en toevou in Sy liefde! " - Anonymous

  • Jun 13, 2019 - R 102.82
  • "Odin's Smile is just the cutest. He's a little fighter ????" - D'Mitri Bailey

  • Jun 10, 2019 - R 210.00
  • "Every drop help to reach the target" - CUDDLE BUNNY

  • Jun 09, 2019 - R 101.50
  • "Ek dink so baie aan julle gesin. Sal probeer om weer te gee. " - O'Dine

  • Jun 09, 2019 - R 154.23
  • "Sy glimlag gee mens sommer hoop. God will come through. " - Nadine

  • Jun 08, 2019 - USD $ 70.33
  • "Good luck buddy, hoop jy kry baie donations" - Tyrone hendricks

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Statistics

Donations to date

R 6 416.21

Fundraising target

R 100 000.00
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Odin Adams Medical Cause

Odin Adams Medical Cause Logo

Lydon Adams from Paarl has created this campaign for his son Odin who is 12 months old and is in need of very expensive genetic testing to be able to be officially diagnosed.