The Day My Daughter With a Rare Disease Decided to Donate Her Hair

Lynn with her long hair

At 20 weeks of pregnancy I was scheduled for an anomaly scan, which is a routine detailed ultrasound. The two previous ultrasounds were 90 to 99 percent sure I had a baby boy, only I was secretly dreaming of a baby girl and when the anomaly scan confirmed I had a girl, I was flying with happiness. I still remember very clearly the first thing I did after that appointment: go to the nearest baby shop and buy all the cute baby girl headbands and small stick-on bows that I found. From that day on, I started dreaming of my baby’s hair and how I would enjoy brushing and styling it everyday.

True enough, for eight years, I enjoyed brushing and styling my Lynn’s hair. It made me happy when she’d come home from school to tell me her friends and teachers complimented her on the new hairstyle. I could see her eyes twinkle when she reported, “ Mommy everybody likes my new hairstyle.” It was pure joy for me to take care of my daughter and
anything related to her. I didn’t mind waking up at 5 a.m. to prepare her lunch bag and make special decorations for her food. I made sure her school costume was always clean and ironed and sprayed with a refreshing fragrance. I loved to tend to the small details, like keeping her pencil case clean and refilled, laminating her books and copybooks and customizing her name tags. So, styling her hair was a big deal for me, a pure enjoyment.

Lynn loved her long hair and she always shared new styling ideas with me, but the past few months, I hadn’t been able to style her hair because she had become very sensitive to touch. Her recent diagnosis with erythromelalgia (EM), or “the man on fire disease” has imposed new challenges to her overall lifestyle. Washing and drying her long hair would mean a long episode of burning pain to Lynn, because the temperature change would trigger her bodyto flare. The flares in her scalp made it red and sore, so brushing or tying her hair was very painful, let alone styling it and adding pins, bows, or elastic bands.

Lynn posing with long hair.

On weekends, Lynn loved to sneak into my bed in the morning and have some “ girly talk” like she called it. A few weeks ago, as she lay in my bed, cuddled next to me, I softly caressed her hair. She looked up into my eyes and said, “I miss having you make new hairstyles with my hair mommy, you are so creative.” Choking with tears I replied, “I miss that too baby, and I’m sorry that it hurts so badly,” and I hugged her tightly. At that moment, she jolted upright in bed and said, with a huge smile on her lips and twinkling eyes, “I have an idea!” I asked what her idea was, and she surprised me by saying that she wanted to donate her hair to sick kids who have lost theirs. Honestly, her suggestion took me by surprise, and I wasn’t ready to let go of my baby’s long beautiful hair. I was also afraid she might regret cutting it later on. The past few months she had given up on a lot while we traveled looking for a diagnosis and a treatment. She had already left behind her home, school, teachers and friends, and given up on ballet and piano. There had been too many changes and forceful sacrifices because of her EM. Her activity level was impaired, and so were her sleeping and eating habits. I tried to talk her out of her idea by suggesting she should wait till her hair was longer. I tried convincing her of alternative styling methods that are less painful. All to no avail! She had made up her mind. She said one sentence, and I caved in.

“Mommy, I think it is time another girl enjoys my hair; I’ve enjoyed it long enough. Let’s give hope to others who are in pain like me.”

At the age of eight and a half years, I watched my daughter donate her long beautiful hair to kids with cancer — the hair that I loved to style and brush for all those years and smell every morning and evening. Her words kept playing over and over in my head. Her hair will now
go to another little girl and make her smile despite the pain. The hairdresser and the people waiting at the salon congratulated Lynn for her kind heart. I felt so proud of her for having the early wisdom of wanting to spread hope to others who are also in pain like her. I was so proud that her pain only brought out the best of her.  Lynn was smiling through out the whole process and despite the flare she had at the hairdresser, she refused to stop.

After leaving the hair salon, she proudly said, “It will grow again mommy, it’s just hair.” 

Follow this journey on The Fire Fighter Mom 

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