The case of Tobias Weigand – an inspiring story of strength and perseverance

• Geschrieben am 2 Januar 2017
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Ms Weigand contacted us this Christmas about a product that really helped her little son Tobias. We followed up with Ms Weigand to discover a beautiful and inspiring story of strength, perseverance and one Christmas miracle. And we decided to tell it.

A rare disease with a sudden onset

Late 2008 the Weigands were a happy family of four when an unexpected tragedy hit their little son Tobias.

‘He was the healthiest kid I ever knew. He never got the flu, never an ear infection, never even an allergy.’ – Ms Weigand recalls.

When it all starts Tobias is just 3 years old. His symptoms initially do not look that serious.

‘My daughter Laura was just 4 weeks old and Tobias was very happy about his little sister. One day he got a little fever and he was weak, so we went to the hospital, to the children’s physician and to the university hospital… It did not look severe, but I could sense something was not okay.’

But no one could tell the family what was wrong, and Tobias’ health was just deteriorating.

A labyrinth of diagnoses

After a short period of suspected diagnosis of leukemia, the doctors finally discovered what is torturing the little boy is an autoimmune disease. And the family began their search for stem cell donors.

However, the exact type of the disease, being so rare that there are only about 200 cases recorded worldwide, evaded the specialists.

‘He got several infusions, but he still got more and more ill. And one evening, four weeks after it all started, he just fell unconscious…

The problem was we did not know the enemy we were fighting against. In two or three weeks they knew we are fighting haemophagocytic lymphohistiocytosis, but the problem was a very rare type of HLH called XLP (X-linked lymphoproliferative)- Syndrom. When we really knew what the illness was, he was already in coma – the genetic blood results came two months too late.’

In search of stem cell donors

At that point the family and doctors believed the main problem for Toby’s health was that the immune system was unhealthy. Together with some family friends from the Red Cross the Weigands organized a typing campaign for potential stem cell donors.

‘My boy was nearly dying in intensive care and I had a baby girl on my lap. And other people, people I didn’t know, were fighting for my son’s life. More than 6.000 people came and gave their blood for testing. Since 2009 till now 94 donations came out of this event. Toby gave 94 people the chance to live. He is a live savior for many people’

One of the family’s causes is to debunk the myths around bone stem cell donations. Donors are often difficult to find because the procedure of the donation is unclear and scary.

First, the candidate for donor has to be typed. All it takes is a blood test. The family encouraged anyone to go through the typing, regardless of whether they can help Toby or anyone else in the future, the human life is worth it. Occasionally, the case would require that bone marrow is extracted from the donor’s pelvic bone. The stem cell extraction happens through a dialysis-like procedure. It is a common misconception that the cells are extracted from the spinal cord, which would be an incredibly painful and risky experience. That has never been the case.

If you are supportive to the family’s cause you can type yourself, and talk about it among your family and friends, to help fight misinformation.

A roller coaster of hope

A donor was eventually found for Toby. From another campaign.

‘But the doctors said that they would not give them that donation. Because he is not worth it anymore’.

At that point Toby was stable enough. But all the infections had affected him. The brain tissue was badly injured. He did not react to light, or sound. He could not swallow to feed himself. The doctors believed he would never have a real life again. And they were ready to give up on him. But his mother was not. As a nurse, who worked many years at neurological intensive care, she knew there was no chance, but as a mom she didn’t accept she should just give up.

‘I said I will find it. I will find a solution.’

Ms Weigand declared war on the neurological issue of her son. Since that time she has been researching neurological therapies. She has been looking into multiple sclerosis, autism, and epilepsy to understand the brain better.

A place that really helped Tobias, Ms Weigand says, was the Family Hope Center in Philadelphia.

‘The Americans taught us how to train seeing, how to train hearing, how to train sensitivity to touch. They did a lot of improvement. They use Doman therapy, osteopathy, homeopathy, hyperbaric chamber and other treatments...‘

The basis for Doman therapy is the fact that healthy brain regions can take over the abilities of areas that are destroyed. The therapy is based on the fact that powerful stimuli such as bright light or loud noises stimulate the brain to process these stimuli. The therapy presupposes a high degree of commitment by the parents; Therapy times of about six hours per day by parents and helpers are the minimum requirement.

In 2011 Tobias had good progress – he now responded to sounds. He could swallow again.

And he could complain when he did not feel well, or when he did not like the food. And the doctors finally allowed a stem cell donation. He took the donation quite well because of his mother’s careful support of the treatment.

But the fight for recovering his brain continued.

A Christmas miracle

Because of the many frontiers Tobias’ health had to overcome, Ms Weigand is now a specialist in various treatments. Through the Internet and through her work as a teacher in a nursing school, she has come to know and help the families of patients in coma, or other neurological disease.

‘There was even that little girl with a bad muscle disease called SMA whose doctors were telling her parents in 2011 she would be in a wheel chair soon. We shared Tobias hyperbaric chamber until she got her own chamber. She improved and even is riding the bike. The only person where I did not see any improvement for 5 years was Tobias.’

The next step in Tobias’ therapy would have been to recover his motor skills. But for that Toby cannot lay on his back. Like a baby, that is now learning to crawl, Toby has to lie on his belly. Because of his many health issues and the strong chemotherapy Toby was in lots of pain. And could not. That prevented him of taking the next step in the last 5 years.

Then one day in December, during a lunch with a newly met family, whose son is autistic, Ms Weigand received an interesting suggestion from the mother.

‘She said she was working in a pain clinic, and she had good results with PurePEA. So I just looked it up on the Internet and ordered it. Within one week Tobias had a lot less pain. He was sleeping very deep and we could decrease his spastic medication. Now he was much more alert, and he is singing very loud, he can now lie on his belly and even starts to lift himself up with his arms.

After 5 years of no progress, he was off like a rocket! Nobody could believe. Not me, not our friends, not the therapist, not the nurses. So I got in touch with the doctors at Apran because I wanted to learn more about it and recommend it to my friends’

And this is how we got to know the story of Toby…

So, what is next for Tobias?

Ms. Weigand is very excited for finally being able to go forward. She calls PurePEA a Christmas miracle.

And she has message to anyone who will be touched by the story of Tobias:

‘NEVER GIVE UP!

Do not be discouraged by what they tell you. There could be something your doctor does not know. Keep your eyes open and get into contact with people who are in a similar situation. Together you will find solutions and strength for your daily life.’

The little boy and his family have a lot more hurdles to overcome. Now, with Tobias being more energetic, the next battle is to improve upon his motor skills.

Helping

Unfortunately the Family Hope Center therapy and many supplements, used to regenerate Toby’s brain activity, are not supported by health insurance. The family carries that financial burden by itself, together with donations from friends and well-wishers.

If you wish to be a part of the Christmas miracle for the Weigand family, you can help them through a financial contribution towards Toby’s improvement:

Rotary Schweinfurt-Peterstirn Gemeindienst e.V.
Account Number: 1119
BLZ: 793 301 11
IBAN: DE 737 9330 111 000 000 1119
BIC: FLESDEMMXXX (Schweinfurt)
Financial institution: Bankhaus Max Flessa
Reason for transfer: Help for TOBIAS WEIGAND

In order to make sure your funds are allocated correctly, always make sure you use ‘Help for TOBIAS WEIGAND’ as a note with your transfer.

If you are interested to see some photos of Tobias and his family or to contact them see www.tobias-weigand.de