Story:

When a child faces a serious medical condition, families do everything they can — but sometimes they need extra help.

I’m organizing this fundraiser for my grandson Matteo. He’s been diagnosed with Chiari I Malformation and Syringomyelia — two rare, progressive neurological conditions that affect the normal flow of cerebrospinal fluid (CSF) around the brain and spinal cord.

These conditions require ongoing specialist care, monitoring, and in Matteo's case, surgery. The costs are significant, and while the family is managing as much as possible on their own, we’re reaching out now for support to help cover critical medical needs and ensure Matteo has the best chance at a healthy future.

Introducing Matteo:

Matteo is a bright and spirited 13-year-old with a heart as big as his courage. Quick-witted, funny, and strong-willed, he brings these traits to everything he does, whether he's picking up a new skill at lightning speed or standing up for what’s right.

Over the past few summers, Matteo has grown in independence, creating a personal business, taking on various jobs, and finding meaningful ways to contribute.

He also has a deep love for animals and a natural ease around them. From giving regular baths to his cat and dog to helping out on our farm, he never hesitated to chase down even the hardest-to-catch chickens. Matteo is always ready to lend a hand. His kindness and gentle spirit shine through in his interactions, and animals seem to instinctively sense they’re safe with him.

Matteo's Diagnosis:

Chiari I Malformation occurs when the lower part of the brain, called the cerebellum, extends into the spinal canal and presses on the brainstem. This can interfere with normal CSF circulation and lead to symptoms such as chronic headaches, dizziness, fatigue, balance and coordination issues, vision changes, and other neurological challenges.

In Matteo’s case, CSF flow is currently severely impaired, which increases the risk of further complications and worsening symptoms.

Syringomyelia (syrinx for short) is a related condition in which a fluid-filled cyst, forms inside the spinal cord. This typically results from disrupted CSF flow due to pressure from the brain on the spine. As the syrinx grows, it can compress the spinal cord and surrounding nerves, potentially causing progressive nerve damage, muscle weakness, breathing and mobility difficulties.

The Risks of Waiting:

Matteo’s condition is progressing (his syrinx is growing) which means that without proper treatment, these conditions will worsen. At this time, intervention is crucial to prevent further damage and to give Matteo the best chance at a pain-free, active life.

In Canada, the only surgical option offered has been a highly invasive Decompression Brain surgery with Duraplasty that involves removing part of the skull permanently (C1 Laminectomy) and opening the protective membrane around the brain and spinal cord (dura). 

After extensive research, multiple hospital tests/visits, and spending hours on social media support groups trying to find answers, Matteo’s family discovered another approach offered by the Institut Chiari & Syringomyelia & Scoliosis de Barcelona (ICSEB) in Spain — a world-leading medical center that specializes in a less invasive procedure designed to treat the root cause of these conditions. The team at ICSEB has reviewed Matteo’s case and determined that he is a candidate for their specialized surgery called Filum Terminale Sectioning.

This treatment gives us hope that we can protect Matteo’s future before symptoms progress and his condition becomes more severe.

 Why We Need to Go to Spain:

The procedure, called Filum Terminale Sectioning, is not performed in Canada or the US. It’s based on the belief that many cases of Chiari and Syringomyelia are caused by a condition known as Filum Disease. In this condition, the Filum Terminale, a cord-like structure at the base of the spinal cord, becomes too tight, causing pressure on his brain which may lead to the growth of a cyst (syrinx) in his spinal cord. This traction can lead to the descent of the cerebellar tonsils, the formation of a syrinx, and sometimes scoliosis. The minimally invasive surgery aims to cut the tight filum to relieve tension and prevent the condition from worsening.

The Costs:

The surgery and travel are not covered by our Canadian healthcare system or private insurance, meaning the full cost falls on the family’s shoulders.

Estimated Costs:

• Pre-operative appointments: €200 (~$340 CAD)
• Surgery: €19,800 (~$31,000 CAD)
• Medications & follow-ups appointments: €600 (~$950 CAD)
• Flights for Matteo & parents: ~$3,500+ CAD
• Accommodation (2+ weeks): ~$3,700–$5,000 CAD
• Meals & daily expenses: ~$3,000 CAD

Total Estimated Cost: $42,000+ CAD

Your generous donation no matter how small would go directly towards the cost of surgery, post operative care, and associative medical expenses.

 Matteo is scheduled to undergo surgery as soon as possible. This will involve a 1-day hospital stay and follow-up care at the 3-day and 10-day mark.

To understand more about the impact of Chiari malformation and syringomyelia, and the experiences of others seeking similar treatments, you can read these stories:

• Aidez Félix à lutter contre le syndrome de Chiari  - https://www.gofundme.com/f/aider-felix-a-lutter-contre-le-syndrome-de-chiari
• Fundraiser by Jessica Riggs : Help me fund Specialists Life Saving Spinal Surgery -   https://www.gofundme.com/f/specialists-life-saving-spinal-surgery

How You Can Help:

We are reaching out to our community of loved ones, friends, and kind-hearted strangers for help. Every donation — no matter how big or small — brings us closer to giving Matteo the chance he deserves. If you’re unable to donate, sharing this campaign would also mean the world to us.

From the bottom of our hearts, thank you for supporting Matteo and standing with our family during this important journey.

If you prefer to support us through other means, feel free to reach out directly and we’ll share more options.

With gratitude,

Shirley & Matteo’s Family

#ChiariWarrior #SyringomyeliaAwareness 

Aidez Matteo à obtenir la chirurgie dont il a urgemment besoin

Chers Amis,

Je lance cette collecte de fonds pour mon petit-fils Matteo, âgé de 13 ans. C’est un garçon brillant, gentil et courageux, qui mérite de vivre une vie pleine et en santé, sans limitations.

Matteo a été diagnostiqué avec une malformation de Chiari type I et une syringomyélie, deux maladies neurologiques rares et progressives. Ces conditions empêchent la bonne circulation du liquide céphalo-rachidien entre le cerveau et la moelle épinière, provoquant des maux de tête chroniques, des douleurs, de la fatigue, des troubles moteurs, et des risques de dommages permanents.

Au Canada, la seule option proposée est une chirurgie cérébrale invasive comportant de nombreux risques. Après de longues recherches, sa famille a découvert une alternative spécialisée et moins invasive offerte à l’Institut Chiari & Syringomyelia & Scoliosis de Barcelone (ICSEB), en Espagne. L’équipe médicale a confirmé que Matteo est un bon candidat pour une intervention appelée section du Filum terminale, qui cible la cause sous-jacente de ses troubles.

Cette chirurgie, non offerte au Canada, pourrait diminuer la progression de la maladie et soulager ses symptômes avant qu’ils ne s’aggravent. Malheureusement, les coûts associés à la chirurgie, au voyage, aux suivis médicaux et à l’hébergement dépassent 42 000$ CAD et ne sont pas couverts par l’assurance.

Nous faisons appel à votre générosité : chaque don, petit ou grand, contribuera à offrir à Matteo une vraie chance de vivre sans douleur et avec espoir.

Merci de tout cœur pour votre soutien et vos partages.

---Shirley & la famille de Matteo

#ChiariWarrior #EspoirPourMatteo #Syringomyélie