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BORN BRAVE -Baby Matthew born without skin

BORN BRAVE -Baby Matthew born without skin

Personal message

We are the Van Eeden Family from Durban South Africa, Jacques (my husband)and I (Susan) welcomed our brand new Baby Matthew Lee Van Eeden, into our little Family the 10 September 2018, Matthew was born with a Very RARE Genetic skin Disorder suspected to be Epidermolysis Bullosa. He was born at full term however, he was born without skin on both his feet and his left hand. His skin blisters at the slightest touch and this causes open wounds on his little legs. He battles with blisters in his mouth and Throat - battles to eat, to swallow, and there is simply NO CURE, only preventative measures and wound care.

As a mom I never expected my little bundle of JOY to surprise us with something so Horrific, so unexpected and so INCURABLE. He is such a fighter, the beginning was really hard dressing changes were extremely painful and very raw, medication in a newborn is frowned upon as it can cause so many different complications. His pain and me watching and holding him down was simply unbearable. We were given the worst diagnosis,that if this were the severe form then he would not survive. Prepare for the worst they said. And this is what we did and continue to do daily.

Matthew needs a genetic Test that will tell us the exact strain of the EB that he has and what we could expect going forward. We are hoping for a case of EB simplex,which means that he will need a lot of care but will still be able to lead a normal life and hopefully manage the wounds with continuous treatment. GENE testing in SA for EB is nonexistent and not covered by the medical aids as it is part of the diagnosis. The TEST would need to be sent overseas to the US or UK and depending on the exchange rate is between R35000 and R40000. This is only the beginning. We require the funds to assist with Doctors bills and the genetic test that will determine the Future Treatment of our little man and we will no longer guess how to treat him but rather continue with managing the Incurable EB with better sight of the future.

Matthew is more active now that he has hit the 6-month mark and is mobile. This has struck up an excitement that he is developing at a good pace however also the fear of the unknown as he starts to move and become more active. We desperately need to have this test done with a matter of Urgency, not only for our own peace of mind but to ensure he gets the best possible care and that the preventative measures to ensure no further damage to his already fragile body.

Every Cent Donated by you will be used to fund the Genetic test that is required for Matthews condition. The balance of this will be used to pay the treating doctors and overrun bills that keep growing and growing.

With your help Matthew will be given the best possible treatment, understanding what to expect and how to manage it. IN SA Epidermolysis is almost unheard of with only a few cases reported and thus all testing is unavailable here.

Donations

  • May 23, 2019 - R 1 028.20
  • "Best of luck to this very special little guy. " - Anonymous

  • May 16, 2019 - R 5 141.00
  • "My small contribution to your baby. All I ask is that you google St. Raphael's healing prayer." - A Friend.

  • May 15, 2019 - R 1 265.00
  • "All the best guys" - Ricky

  • May 15, 2019 - R 3 010.00
  • "We pray for all of you " - Duggie and Tersia

  • May 07, 2019 - R 6 000.00
  • "Dink aan julle xx beste wense xx" - Anonymous

  • May 06, 2019 - R 514.10
  • "Hope you get better soon little precious boy! Love Rochelle and Shaun" - Rochelle/Shaun

  • May 02, 2019 - R 3 084.60
  • "Hope this donation helps" - Johan van Niekerk

  • Apr 30, 2019 - USD $ 220.35
  • "Lots of love x " - Wayne & cayley x

  • Apr 26, 2019 - R 2 010.00
  • "Stay strong. Best wishes " - Michael du Preez

  • Apr 25, 2019 - USD $ 21.85
  • "Thinking of you..." - Tez

  • Apr 25, 2019 - R 1 010.00
  • "Sterkte julle" - Shane en Sune

  • Apr 24, 2019 - USD $ 35.43
  • "Hope this helps " - Alan Du preez

  • Apr 24, 2019 - USD $ 37.20
  • "Thinking of you guys!" - Kevin du Preez

  • Apr 24, 2019 - R 3 084.60
  • "Hope this donation helps" - Johan van Niekerk

  • Apr 24, 2019 - R 514.10
  • "Be strong little guy. Get better soon!" - Scott Shooter

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Statistics

Donations to date

R 31 169.45

Fundraising target

R 65 000.00
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Matthew Lee Van Eeden Medical Cause

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