Help us Support Alex's medical journey

Doing this on behalf of my best friend in Namibia, Africa. Unfortunately this platform is not available there and with an exchange rate of €1 = N$ 21, every euro will make a huge difference. The letter written is from the mother.

Hello friends, family, and kind-hearted strangers,

We are reaching out with full hearts and a deep sense of urgency to ask for your support in helping our precious son. At just one year old, he has already faced more challenges than most do in a lifetime.

*His Story Began with a Difficult Start*

We had a normal pregnancy. No complications. No warning signs. Everything looked perfect—until the moment he was born.

He was born silent and lifeless. We didn’t even know his gender yet—we had kept it a surprise. But as soon as he entered the world, there was no cry, no breath. He was immediately whisked away for emergency resuscitation, and to this day, no one can tell us exactly what happened, or how long he had been without oxygen.

After he was stabilized, he was placed on a therapeutic cooling protocol for 72 hours to prevent further brain injury. His body temperature was kept at 33°C, and during this time we weren’t allowed to hold or even touch him. Our brand-new baby—cold, naked, shaking, and surrounded by machines and tubes. It was the most devastating thing we’ve ever experienced.

*A Complex and Ongoing Diagnosis*

Although his diagnosis is not yet final, we have been told he is likely facing:

- Moderate to severe HIE (Hypoxic Ischemic Encephalopathy)

- Brain shrinkage due to trauma

- Damage to both grey and white brain matter

- Significant injury to the motor cortex

- Spastic Cerebral Palsy

In addition, he has been diagnosed with Infintile Spasms, which proved to be incorrect. His doctors then suspected temporal lobe epilepsy, but this too seems to be incorrect. His seizures have been difficult to manage with first-line treatments, we did see small improvements with Epilim (sodium valproate), but he still has roughly 40 to 90 jerks a day. It’s a long and uncertain road.

Our son is also facing global developmental delays. He cannot yet crawl, or sit unassisted, but his will and spirit are strong. Every small gain is a huge victory. He is currently receiving physical, occupational, and speech therapy, which are crucial for his development. Additionally, we are closely following a medically prescribed ketogenic diet to help control his seizures, which involves strict food measurements and special ingredients, increasing both time and financial burden.

*Why We Travel So Often*

We are based in Namibia, where unfortunately there are no pediatric therapists with specialized experience in complex neurological or developmental needs. To access the quality of care our son needs, we travel to South Africa every two months for intensive therapy blocks. These trips are essential for his progress, but they are also costly—covering transport, accommodation, therapy fees, and special supplies we can’t find locally.

*His Medical & Therapy Needs Include:*

- Ongoing Neurological Care and Testing

He has undergone multiple EEGs, MRIs, and genetic panels, with more tests likely ahead, including metabolic screening and additional neuroimaging. Regular monitoring is essential, often requiring out-of-pocket costs.

- Daily Medications and Medical Supplies

He has been on Keppra, Phenobarbital, Rivotril, Sabril, steroids, and now Epilim—each with its own cost and monitoring needs. We also need access to bloodwork and side-effect management.

*Special Needs Equipment*

As his mobility and motor coordination are delayed, he will need:

- A supportive high chair

- Adaptive seating and mobility aids

- A specialized stroller or wheelchair as he grows

- Specialized therapy equipment

*Developmental Support*

His therapies are intensive, and not all are covered by insurance. We also hope to provide him with DMI therapy, swimming therapy, and other proven programs to support motor and cognitive growth.

*Ketogenic Diet Support*

We currently prepare 6 small meals a day, measured to the gram, with precise 3.5:1 fat to protein+carb ratios. The cost of keto-friendly ingredients, supplements, and meal prep tools adds up quickly.

*Why We Need Your Help*

Despite doing everything we can to manage costs and provide what he needs, we are reaching a point where we need to humbly ask for help. His care is a full-time commitment. One parent has left full-time work to be with him around the clock. We want to give him the best chance at a full and joyful life, but we can't do it alone.

*Your donation will go directly toward:*

- Medical bills and hospital visits

- Neurology consultations and testing

- Therapy sessions and specialized programs

- Special needs equipment and mobility aids

- Ketogenic diet supplies

- Travel costs for out-of-town specialists

*Looking Ahead*

We don’t yet know what the future holds. There may be further diagnoses, more medications. But we know one thing for sure: our son deserves every opportunity to thrive. With your help, we can give him that chance.

Thank you from the bottom of our hearts. Even a small donation or a share makes a big difference. You are part of his story now—and we’re so grateful you are.

With love and hope,

Alex, Thimo and Natascha