Help Adam to overcome brain cancer DIPG

Hello beloved family, friends and strangers,

Our son Adam has been diagnosed with Diffuse Intrinsic Pontine Glioma (DIPG) last year summer. This horrific news came out of nowhere like a trailer-truck crashing into you on the highway. As parents it felt like our life has been taken over by a terrible unrealistic storm. A storm that you cannot stop, touch, or control, but the only option is to go straight through it. News like this is the hardest for any parent to receive, an unexplainable overwhelming pain that consumes you.

Our strength in God is tested on a level like never before, but even though we were scared and terrified, yet we remain strong in the Lord and his word. We pray as a family, and hand over Adam disease into Gods hands. Action and faith work together as we pray to God asking Him to order our steps as we go. Guide us with the decisions we need to make, heal Adam and get us through the storm.

DIPG is a tumor that is located in the center of Adams brainstem, thus inoperable. The space it takes up in the brain, makes Adams have double vision and off balance when walking. Adam also expieriences a loss of fine motor skills like writing. There is no standard treatment to cure this disease. However there are a number of different medical trials, that are battling DIPG.

Adam underwent MRI’s and a few days later he went straight into surgery (Biopsy).

This was to verify and confirm Adam’s condition, ( the double vision and off balance when walking). Within a few days we got the results, these confirmed what the doctors suspected. The doctors told us that it's a Grade 4 Tumor located in de midst of the brain stem, and there’s no cure for this kind of disease.

Our minds literally blacked-out not fully understanding what this actually meant. After a lot of research we came to understand the severity of the situation.

Right after Adam's surgery, he was scheduled for 30 fractions of radiotherapy and he finished the treatments in October. Together with the medical team, we are currently looking for suitable treatment options for Adam. Since the treatment for this disease is not available in The Netherlands at this moment, we are searching globally.

Adam is a clever and funny kid, always having fun wherever he goes. He’s always smiling and loves to play with Lego with his big brother. Loves his family and enjoys going on holiday.

Adam is praying for the tumor to go out of his brain. “So I can go back to see normal and walk normal again and go on with my life” Adam loves to go to school and he dreams of becoming an engineer, he likes robots and cars which he builds up with a lot of Lego.

Adam loves to eat, but his eating habits and taste has changed due to the DIPG.

We can see that Adam is sad at times, hurt and tired about being sick, but he consistently shows a positive and fighting spirit that keeps us all strong. He still wants to go to school and play outside like before. As a child he knows God will heal him and on this he’s waiting patiently.

The search for a suitable treatment for Adam worldwide, is slow and options are very limited.

We are constantly checking DIGP.ORG for updates and the best clinical trial for Adam.

We won’t stop until we get the best possible (trial) treatment available.

Any additional information that can help Adam, is always welcome & highly appreciated.

For other parents that are going through the same situation, kindly share your story.

Your suggestion and shared information can save lives.

Since medical healthcare insurances do not cover overseas clinical trials or treatments, we are reaching out for help to raise the necessary funds for treatments or clinical trial to eradicate this disease in Adam.

We thank every single one of you for sharing our story, your donation and support.

With kindness from one family to another.

No words can explain our gratitude to everyone that have continuously shown their support to us as a family, even before this page has started up.

We love you all and pray that God blesses you and keep you safe in your life journey.

For further updates about Adam, we will keep everyone posted via our

GoFundMe page.

A warm hug & greetings and God Bless you all.

Family van der Berg-Benilia

Video Part 1: 

Overcome the DIPG storm