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Slow down Jeandre's ALS

Slow down Jeandre's ALS

Personal message

*Update* 14 August 2022

Jeandre is now on the midpoint of her third course of Edravone. Our next step is to get a stent to lessen the hardship of repeatedly fitting drips during treatments. There are only so many times you can switch arms. Fortunately this will be covered by medical aid. Let it be said, the Edaravone is nothing short of miraculous in it's effacacy. In the long break between round one and round two Jeandre's condition noticibly worsened. Her walk became a shuffle, that she could only sustain for short bursts. Her hands clenched up, limiting her ability to perform even the simplest of everyday tasks. In her own words, it is a hell of a thing to have to plan and dread brushing your teeth. Worst of all, I had to come to her aid for her to transition from sitting to standing, often finding her on all fours because of her own efforts to stand. I have to work and cannot be there all the time. During this time there was a lot of stress about what would happen if Jeandre really needed me and I wasn't there.

Within five days of round two of Edaravone, she was noticibly better, and now, halfway through round three, you wouldn't know that she has this disease if you saw her walking on the street.

We have to raise another 3 courses (R41 400). At this point there is no medical aid coverage for this treatment. Hopefully Jeandre's case will contribute towards changng this reality for future sufferers.

As always, we remain grateful to our donors, family and friends. Bless you all.

*end of update*

We have successfully paid for round two. Thank you to all our angels out there. Your kindness is so deeply appreciated. On Friday Jeandre begins the second phase of this round of treatment. The schedule is 14 days on, ten days off. Her prescription is for a total of six 28 vial rounds of treatment at R13800 per round so we have more challenges ahead financially. this is why I adjusted the target up to R90 000. We are so profoundly grateful for the kindness and generosity we have recieved so far and only ask that those who have given pass the link on. Share it on facebook or twitter or wherever it might gain traction. The Edaravone is working. Jeandre has recently started doing aqua aerobics at Virgin Active and is in the pool five days a week. This was an impossible idea before this treatment. All the credit goes to our wonderful donors.

Below is the previous text unedited.

We had great success with round one, but those gains are rapidly diminishing. On the advice of the Neurologist, we are kicking our campaign into gear again to get round two of the treatment going ASAP. If you are new to the campaign, see below. To all who have already helped, thank you.

ALS is a devastating disease. My wife, Jeandre, was diagnosed with this condition in July 2021. ALS is a degenerative disease that has no cure.

Those afflicted gradually lose their motor functions, then their ability to speak, then their ability to breathe unassisted, and finally they pass away, usually within 2-4 years. Famous SA Rugby champion Joost van der Westhuizen lost his life to ALS. Just as the world witnessed his decline, I am seeing the same thing happening to Jeandre. There are good days and bad days, but overall, there is a noticeable decline in function and mobility that is undeniable.

While we as a family are accepting Jeandre's condition, we hope for her to be with us as long as possible with as much mobility and freedom as possible. Her youngest son is 14 and it is our great hope for her to see him graduate high school before she passes.

There is new hope in the form of a drug called Edaravone that has shown great results in slowing down the progress of ALS. This drug is not yet listed in South Africa and Discovery Medical Aid does not cover ALS (Motor Neuron Disease) on any but their comprehensive plans, which is far beyond our means. A course of treatment by intravenous infusion consists of 28 ampules. We will need four courses to treat Jeandre for a significant impact.

If this medication lives up to the very positive medical trial results, it will significantly improve her quality of life and hopefully, make it possible for her to see her youngest son through to young adulthood. We are hoping that this medication will be approved by the South African Medicine's Control Council at some point and hopefully will be then be subject to medical aid coverage. We have had great support from friends, family, and organizations dedicated to helping those afflicted by this terrible disease.

We face many financial challenges as Jeandre was diagnosed without insurance. We have medical aid, but our medical savings do not even begin to cover the huge expenses associated with ALS. 

We are asking for funds to be paid directly to the supplier of the Edaravone so we can be as transparent as possible about the purpose of this fundraising.

Update: Jeandre has completed the first course of Edaravone. It made a significant impact. Now, a month after treatment, we are gearing up to raise more funds for the next course of treatment. We cannot express enough gratitude to all who have given so far. You are our heroes.

As our expenses have been mounting and our medical aid has so rapidly depleted we will be asking Back a Buddy to pay other related medical expenses going forward, but, as before, funds will still be paid directly to the relevant medical service provider. We have also raised our porjected target as the Edaravone treatment regieme has been modified to be 3 consecutive treatments going forward. 

As per the campaign creator’s request, funds raised will be paid directly to the relevant institution.

Donations

  • Aug 14, 2022 - USD $ 334.16
  • "All the best both. Sterkte." - Chris Oates

  • Jul 05, 2022 - USD $ 661.00
  • "Sending lots of love! " - Nicky

  • Jun 28, 2022 - R 200.00
  • "Stay Strong , keep your hope alive " - TJ Simmons

  • Jun 18, 2022 - R 1 000.00
  • "Sterkte!!" - Tinie Gericke

  • May 26, 2022 - R 700.00
  • "Sterkte ons bid vir jou" - Rienie du Plessis

  • May 17, 2022 - R 1 000.00
  • "

    Bid vir jou Jeandré

    " - Wiehahn & Martha Victor

  • Apr 25, 2022 - R 6 600.00
  • "

    Hou vas aan elke dag se genade, Jeandre.

    " - Annoniem

  • Apr 23, 2022 - USD $ 40.00
  • "Ek bid vir jou" - Anonymous

  • Apr 21, 2022 - USD $ 53.20
  • "All the best to Jeandre." - Una ORiordan

  • Apr 21, 2022 - R 350.00
  • "keep strong " - Andrews Melissa

  • Apr 20, 2022 - USD $ 360.89
  • "Thinking of you guys. Sterkte both," - Chris Oates

  • Dec 29, 2021 - R 500.00
  • "Sterkte en moed hou, Jeandre. Rienie du Plessis" - Rienie du Plessis

  • Dec 29, 2021 - R 1 000.00
  • "

    Bid vir jou Jeandré

    " - Wiehahn & Martha Victor

  • Dec 20, 2021 - R 200.00
  • "

    Jeandre is a very special person to me. I wish her all the best & a prolonged life

    " - Pieter Theron

  • Dec 19, 2021 - R 1 500.00
  • "Keep on believing Andrew & Jeandra " - Mounsear-Wilson family

  • Dec 19, 2021 - R 2 000.00
  • "Stay strong and don’t believe the time that the doctors have predicted. You are an individual." - The Old Man

  • Dec 18, 2021 - R 1 500.00
  • "So sorry to hear. Sending strength and hope." - Anonymous

  • Dec 18, 2021 - USD $ 641.38
  • "We love you." - Smith Anthea

  • Dec 17, 2021 - USD $ 331.75
  • "Keep strong. " - Chris Oates

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Statistics

Donations to date

R 52 072.45

Fundraising target

R 90 000.00
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Jeandre Spangenberg Medical Cause

Jeandre Spangenberg Medical Cause Logo

ALS is a devastating disease. My wife, Jeandre, was diagnosed with this condition in July 2021. ALS is a degenerative disease that has no cure, Denneoord, Western Cape.

We have medical aid, but our medical savings do not even begin to cover the huge expenses associated with ALS. 

We are asking for funds to be paid directly to the supplier of the Edaravone so we can be as transparent as possible about the purpose of this fundraising.