HELPING OUT ALMOST 500 CHILDREN IN EUROPE ...

Below I give a description of the case studies around the prevailing problems for the Belgian baby AIDEN {born 30th November 2013}...

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The disease pattern: A rare genetic disorder: NEUROFIBROMA OSTEOARTHRITIS TYPE 1, combined with PSEUDOARTHROSE.

The type 1 by NEUROFIBROMA OSTEOARTHRITIS is an abnormality in the brains and in the nerves.

Barely TEN children in our country of Belgium have this disease, and 500 children in EUROPE.

"Aiden is facing autism, learning disabilities and development problems. But also tumor in the eyes and in the brains".

There must therefore be carefully checked that Aiden don’t develop 'bullets' in the eyes. Because otherwise the child risks to become blind by such a tumor, this if the tumor can’t be cured by chemotherapy.

NEUROFIBROMA OSTEOARTHRITIS is incurable! Anyway AIDEN will bear the illness his whole life.

The phenomenon PSEUDOARTHROSE for AIDEN: a bad piece of bone above the heel, so his calf and shin don’t grow together.

There is no hereditary, since both parents are not carriers of this genetic abnormality.

Moreover, AIDEN got a sister, nor are hereby no deviations to determine.

Now it is established that for AIDEN himself genetic load will occur, whereby there is a 50% chance that the disease is transmitted.

"EXPENSIVE HOPE!"

"WITHOUT MONEY FOR RESEARCH AIDEN’S LEG MUST BE AMPUTATED”

Treatment with stem cells in research: a University team of the KU Leuven is currently conducting research on PSEUDOARTHROSE, which professors are on the verge of a revolutionary medical procedure to realize that stem cells from a healthy bone taken and the weakness be applied, so that the bone can still grow.

"If successful, there is hope for AIDEN and 499 other children. Then their legs don’t need amputation."

The medical team of KU LEUVEN: for the research 1.000.000 {ONE MIILION} EURO is needed, for which no subsidies are obtained ...

The remaining nine Belgian families involved with children with the same disease, in other Provinces have already retrieved barely 100.000 EURO from sponsor activities.

The family of AIDEN is trying in our province a lot to organize, "until now, I caught a number of companies flounder" says the mother Leen MAECKELBERGH says: "I did not found any entrepreneur who wants to sponsor, the disease is unknown, there is no return " "apparently PSEUDOARTHROSE less 'hip' for sponsors than dementia or cancer, because this genetic disorder is much rarer. "

"The doctors stated that surgery imposes itself between the ages of 3 and 4 years. If the new stem cell technique can’t be applied, Aiden’s leg should be amputated, the doctors give indeed the son little less chance of a successful, traditional bone surgery ... "

For the fighter AIDEN, I myself decided to jump into the breach! All avenues will be evaluated and a strategic plan is developed together with Aiden’s family.

Apart from initiatives already taken by the parents, I opened some avenues and already took some concrete orientations for initiatives, immediate and in the very near future:

1. Contact with U.S. Vice President Jo BIDEN: central to this perspective, "Biden support Aiden" if only referred to the phonetic value and the value "..IDEN" interchanging the letters "A" and "B" ... the contact request has been already launched during the weekend of 9th-10th February 2013!

2. Approaching MrsMichelle OBAMA with a support request is imminent.

3. Approaching my friend Prof.Arun Gandhi, the fifth grandson of Mahatma GANDHI, with a support request is imminent {has been processed}

4. Approaching MERCY SHIPS BELGIUM in order to brainstorming for other avenues open for networking and linking to lay {case was initiated}

{www.mercyships.org - www.mercyships.be}

5. Creating a website in the optic of "networking" for sponsorship

6. Consultation with Sir Dirk De FAUW, Chairman CPAS Bruges  {*} {scheduled for Thursday, February 21st, 2013}

7. A circular publishing to the various regional service clubs {Lyons Clubs International, Rotary clubs, Round Table International, Kiwanis, etc. ..}

8. The instrumentation of the potential in the site www.bone4kids.be: proposal to create a guestbook ‘case AIDEN’

Medical avenues. Opening medical avenues will also not be amiss, and here I imagine whether within the integral scope also "chromatographic therapy" should be more than worth to put on the agenda: www.chromatotherapie.com .

 Personally I have contacts with Dr. DELMAS PARIS, the person behind chromatographic therapy ...

The parents have also been some outlines drawn, leading to following initiatives:

1. Benefit Spaghetti evening in Municipal Primary School "The Triangle" in Bruges’ area ‘Sint-Andries’, organized on Saturday 27th of April 2013

2. Following discussions with the President of the CPAS BRUGES: the organization of a Benefit, organized by the CPAS {*} BRUGES (more details will be available in the very next weeks)

{*} CPAS: Public Center for Social Welfare

Furthermore, there is also the Bone4kids association, which was established with the Louvain doctors:

Cfr. website www.bone4kids.be


PS:The contribution of the PCSW BRUGES {OCMW BRUGGE} has since be defined & results in a benefit PAËLLA-event organized on 22nd March 2013 in BRUGES...

Done at BRUGES {Belgium}, February 14th , 2013

Author:Pierre-Henri, aka Mentor Kofi Togbe Gandhi_3000 {Belgium-Ghana}

Contacts:

Mentor_Gandhi

      TELECOM: cell +32479057165 / landline +3250706310 / FAX +3250950703

      E-mail: [email protected] 

AIDEN's parents: landline +3250381747

Action e-mail account: [email protected]

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