Can you do self-insemination at home ?
The moment we received the news, my five-year-old daughter, Lily, looked up at me with concern in her bright purple glasses and asked, “Why are you crying, mommy?”
“I’m worried about your medicine,” I replied. “We don’t know how we will get it soon, and if you can’t get your medicine, you will get sick.” She gazed at me for a beat, her face filled with trust, and confidently said, “I’m not sick, Mommy. I won’t be sick.”
Oh, how I wish that were the case.
When I say “get sick,” it’s a gentle way of saying something far more chilling: she could die. How do you explain to a child that they are facing a relentless, fatal illness? That they have a progressive disease, and the sole medication keeping it at bay will no longer be available come October? This medicine is effective and safe — it just won’t be provided to her or many other children like her. Someone made the decision to stop it, and she will bear the consequences of that choice with her life.
Lily is a spirited five-year-old, bursting with a love for life. She adores wearing sparkly sunglasses over her regular glasses, twirling in a tutu while singing her favorite songs. Her dream is to grow up, get married, and follow in her big sister’s footsteps.
However, Lily suffers from Niemann-Pick Type C (NPC), a rapidly degenerative disease often referred to as Childhood Alzheimer’s due to its impact on young minds. It leads to seizures, tremors, and choking, but the most heartbreaking aspect is what it takes away: her laughter, her memories, her ability to dance at recitals, and the very essence of childhood joy. Ultimately, it threatens to take her life.
This is what her treatment, VTS-270/Adrabetadex, is fighting against. Thanks to this medicine, Lily is currently holding her ground against NPC — a balance that is precariously fragile. Tragically, in January 2021, Mallinckrodt Pharmaceuticals announced they will halt all access programs and distribution of the drug in October 2021. The countdown has begun, and we have just six months left.
Lily receives this medication every other week through a lumbar puncture at the amazing Children’s Hospital of Los Angeles. She bravely endures the procedure, cheered on by a team of extraordinary doctors and nurses who bring magic into her life. They wear matching colorful glasses and have fun pins, making her feel special. These dedicated professionals recognize the drug’s benefits and are advocating for continued access.
Children with Niemann-Pick Type C have been safely using VTS-270/Adrabetadex since 2010. Lily started treatment at 19 months through a compassionate use program. Before this, she struggled to walk, was weak, and faced severe challenges with feeding. We feared we might lose her before she even turned two due to her aggressive form of the disease.
Then, a miracle happened. After just five doses of VTS-270, she began to walk and thrive. Now, she joyfully attends pre-K, rides her tricycle, and climbs into her sister’s top bunk. This medicine has given her life, and without it, her future is bleak.
The reasons this medicine isn’t moving forward toward approval are complex and fraught with challenges. However, the reality is simple: without this treatment, Lily will die. The same fate awaits many other children battling this rare, fatal disease.
As a mother, I am not concerned about placing blame; my focus is on urgent solutions. This medicine is effective, and her doctors confirm its success. What I care about most is preserving my daughter’s life and the lives of all the children who rely on this drug. We must ensure Lily continues to experience joy, friendships, and the wonders of childhood.
This issue is solvable. We have the power to inspire change and save this vital medication, but we need your help. We need a united front of mothers and advocates to stand for our children and ensure they have a future. Their trust in us is unwavering; let’s guide them toward safety and health.
To support this crucial mission, please visit our campaign “Save Our Medicine” and learn how you can get involved. For more information on pregnancy and home insemination options, check out this excellent resource on family building. You can also explore more about the importance of self insemination here.
For additional insights, consider reading this related post.
Summary
In a heart-wrenching narrative, a mother shares her struggle to secure a life-saving drug for her daughter battling Niemann-Pick Type C, a fatal neurodegenerative disease. With the pharmaceutical company planning to discontinue the drug, she emphasizes the urgency of rallying support to ensure access for her child and others like her. The story highlights the emotional toll of facing a life-threatening illness and the desperate need for community action.