Help Mila Fight NF1 Plexiform Tumor and Get the Treatment

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Help Mila Fight NF1 Plexiform Tumor and Get the Treatment

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Our sweet daughter, Mila Rose, was born on January 29, 2023. When she was only 6 months old, she was diagnosed with Neurofibromatosis Type 1 (NF1), a genetic condition that can cause tumors to grow along the nerves. By the time she was 11 months old, a large plexiform tumor began growing on her right shoulder.

Despite her young age, Mila has already been through so much. Since October 2024, she has been on a targeted therapy, but her most recent MRI in July 2025 showed that the tumor is still growing aggressively in all directions — doctors even described it as spreading “like an octopus” into her neck and pressing on her spine.

Surgery is considered too high risk, and even if attempted, the tumor would likely return quickly. Mila’s doctors believe that a newer medication, Mirdametinib, offers her the best chance to stabilize or shrink the tumor and protect her quality of life. Unfortunately, this treatment is not available in Canada. The only way for us to access it is through a special program in the U.S., but the cost is overwhelming — $8,000 USD each month, and Mila will need to stay on this medicine for two years.

We never imagined we would be in this position — watching our baby girl struggle and having to fight not only for her health but also for the means to afford her treatment.

Mila is a happy, energetic little girl who loves running, jumping, and dancing. We want to give her every chance to keep living the childhood she deserves — without pain, without the tumor taking away her mobility or her smile.

We are sincerely asking from the bottom of our hearts for your support during this devastating chapter in our lives. Whether through your prayers, sharing Mila’s story, or making a financial contribution, your kindness will give Mila the chance to grow up strong and free from this tumor.

With love and gratitude,
Maze, Mila, and Mark

Organizer

Marzieh Rezamand parsaei
Organizer
Timberlea, NS
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