A Night of Fashion for Lolly’s Locks – A Non-Profit that Cares

I would like to do something that I have never done. Join me in celebrating Lolly’s Locks, a nonprofit that provides beautiful wigs to cancer patients in need. Let me start this post with a Press Release:

 

Writing for DivorcedMoms.com has largely been a gift for me. For me, writing has a kind of therapeutic effect that doesn’t come in any other way. Every once in a while, an opportunity presents itself to do more than vent. Every once in a while, I get the opportunity to write about something or someone who moves me and inspires. Last week, one such gift was dropped in my lap.

This piece is about a cause. It is about an event. It is about the opportunity to be informed about something that touches us all. Lolly’s Locks is a non profit that fills a large void. It is the only organization whose purpose is to provide customized wigs to adult cancer patients at no cost.

Last week, I was given the chance to speak to Jaime Wright, the co-founder and president of Lolly’s Locks, a 501(c)(3) non-profit, whose goal is to provide cancer patients with high quality wigs. A single mom, and BRCA Carrier, Jaime is an inspiration who took lemons and made lemonade. Holding back tears as we spoke, I furiously wrote to try to capture the words and the essence of the woman who spoke with endless love and passion for her cause. It was a true honor.

Having lost her own mom, Lolly, to ovarian cancer, Jaime was on a mission to carry on the wishes and feelings of her mother, the foundation’s namesake. Lucky enough to afford a high quality wig after losing her hair to rounds of chemotherapy, Lolly wished that all others who were subject to the physical weakening of chemotherapy and identity crushing loss of one’s hair, would be as lucky as she was.

For all those whose day is ruined by a bad hair-cut, or just a bad hair day, dig deep and think about what it feels like to wear a recycled wig, or a poor fitting wig, or any wig that takes away the very essence of how we see ourselves.  Jaime’s story, that she was kind enough to share, deals with the very realism that those who lose their hair, are mom’s trying to fit in and carry on… They are busy executives, continuing to work through the devastation of a cancer diagnosis…. They are people, just like you and me, who have responsibilities of families and work. They are not looking for sympathy, they just want to avoid the stares of others and live their lives. They want to work. They want to mother. They want to live.

Let me step back a bit to talk about Jaime.

Jaime lost her mother to cancer. As if to add to that already difficult life event, she was faced with the realization that she and her sister both had the BRCA gene mutation that caused Angelina Jolie to undergo elective double mastectomy and hysterectomy in order to avoid breast or ovarian cancer. In June 2015, Jaime made that same decision. The experience of her mother’s sickness hit the family hard. She had been very close to her mother, as had her husband. Desperate to have her mother meet a grandchild, the couple escalated all of their plans to have a child.  After everything, she thought about whether her own marital difficulties were magnified by being surrounded by the chaos around her. At the same time as her decision to separate from her husband, Jaime made a choice that she hoped would save her own life.  Unable to hold her baby, she relied on those around her. She remembers waking up from her surgery not knowing if her husband was going to be by her side. She had made the choice to take time apart, but after a decade together, she wanted him there. Some habits die hard. I could relate.

Her emotional healing came during the physical recovery.  Together they worked through the difficult challenges of co-parenting. Their marriage was over, but their relationship would continue. Like the rest of us, it is a relationship of necessity, unlike the at will relationship of a marriage.

Solid and steady in our conversation, Jaime and I spoke about her intense desire to carry on the wishes and dreams of her mother. Once able, she went into planning mode, created the non-profit and started her fund raising mission. Without anything but a clear goal, she used the knowledge of those around her to create what is now Lolly’s Locks. The site is a wealth of information. Share it with those in need, shop if you can and contribute or sponsor some lovely lady in need if you can. Filled with testimonials, it is clear that they are making a difference in the lives of those in need.

Jaime was very informative and I want to share some specific questions that we discussed.

1. I asked Jaime about whether her parenting is effected by her experience with breast cancer and the BRCA gene. Thoughtful in her response, she said that she learned not to sweat the small stuff in her co-parenting relationship. She wants to make sure that her kids have a solid relationship with their father. She parents with both fear and empowerment knowing although she has done everything possible to make sure that she is there for her children for as long as possible, her mortality might be effected by things out of her control.
2. I asked her about the idea that her children might have this gene. This is a difficult, yet delayed issue. Since the BRCA is adult onset, children are never tested until they are 18 years old. At this point, the child is a participant in their health decisions. Her hope is that by that time, gene therapy will have evolved to the point that there is a cure.
3. I asked her about education and prevention. Amazed at the bravery of the choices she has made. She spoke about the advances in medicine that allow us to better prepare by asking about genetic testing. So much more is known today, than when her mom was first diagnosed. A few more questions at that point, and offering the option of genetic testing might have saved or extended her life. This is a very important option, in addition to regular medical exams. Physicians today are able to combine information such as our family history and background to present a patient with the full story. For example, if you are a woman of Ashkenazi descent, you might be someone who should speak to your doctor about genetic testing.
4. We also spoke about insurance and physician visits. As time goes on, Jaime explained that the stage has been set for increased affordability of options. Doctor questioning is getting better, and the overall effect is to empower patients to know what to ask for when you see your physician. If you are nervous about going alone, then either take someone with you, or come prepared with questions. Some patients look up to doctors and see them as gods, so they are uncomfortable asking the questions that need to be asked. Jaime suggests preparing questions and lists including Pros, Cons and Alternatives. Education is one of the most important things about what she does. She tries to provide education to the candidates at Lolly’s Locks.

So, what is the process for candidates? The first part of the process is to go to the web site, and fill out an application, though you are welcome to give them a call. There is a financial component, but it is not a specific formula that is used. Jaime likes to take a holistic approach in determining need. As people are more aware of their services, they have more candidates, so like any non-profit, the greatest need that they have is for people or companies to contribute funding.

For those who would like to get involved, you can do so in many ways:

1. Donate  Money is best. Wigs cost us about $1,000 to make, so we are greatly appreciative of donations.
2. Donate Hair
3. Shop! All proceeds go to cancer patients in need
4. View our Events
5. Drink Pink for Lolly’s Locks
6. Become a Sponsor
7. Like us on Facebook… Get the word out.
8. Sponsor someone in need ( Scroll to the bottom)

For Jaime, education before and after a diagnosis are essential. Control and empowerment is her goal. Her “to-do list” is long. One day, she would love to be able to provide wigs for children, and also to take advantage of being in Washington D.C to lobby for better education and insurance coverage for genetic testing to further empower those at risk. This shouldn’t be political; this is a human issue.

“Bald is beautiful, but is should be a choice”, was her final statement to me.

I wished our conversation didn’t have to end. I wiped the tears away, thinking about my dear friend who was about to shave her head on Sunday in support of her own friend who was losing her hair to chemo.

Thank you Jaime.