Kaylynn Cate Kolinek, our second child, was born in 2007 with an enormous red birth mark that covered 1/3 of her head, face and one eye, which threatened her visual ability. From the moment our sweet baby girl was born, we began a journey in uncharted territory that led us through all of the peaks and valleys that so many others face in similar circumstances. We write our story to you so that we may assist others on this path, helping to relieve the anguish that accompanies this medical situation and also to increase knowledge regarding the best course to take for greatest birthmark improvement and the child's well being.
We have a remarkable success story that is truly extraordinary and inspiring. As you can see from the photographs below, also, we created this sequence of photos, there is spectacular improvement in the appearance of Kaylynn’s birth mark after undergoing 13 laser treatments. We feel that if Oprah’s audience saw the extremely dramatic difference in Kaylynn’s condition from her birth until now, that it would serve the greater good for these reasons:
- Raise awareness for birthmarks and Hemangiomas.
- Greatly improve optimism for this medical condition.
- Advance general knowledge of what to expect from various treatments.
- Disseminate Hemangioma information from actual real-life experience.
- Increase public-concern that would generate interest for further R&D.
- Develop compassion for humanity and uplift the human consciousness.
To sum up our experience thus far, here are the highlights of our peaks and valleys:
THE VALLEYS:
- Having a full-body MRI done at 2 weeks old.
- Flying to NY ten times for laser treatments before Kaylynn was 2-years old.
- Learning to cope with having your child go under anesthesia for each laser treatment.
- Learning of the serious side effects of your 3 month old child on steroids.
- Not letting Kaylynn cry because heat causes the Hemangioma to grow.
- When steroids don’t work, being informed about Chemotherapy.
- Being informed that the birthmark would remain for years.
- Fear of Kaylynn losing her vision in her left eye.
- Witnessing the birthmark continue new growth and become more prominent.
- Discovering that Kaylynn’s mother has breast and thyroid cancer.
THE PEAKS:
- Viewing photos of another child whose birthmarks went away.
- Finally finding a doctor who can save her, as he has done numerous times.
- Seeing instant results and watching the birthmark slowly disappear.
- Witnessing our baby girl return to normal development.
- Winning an insurance appeal that ultimately allowed for further treatment.
- Creating closer bonds as a family while we struggle together with this issue.
- Being grateful for Kaylynn’s impressive progress.
- Watching Kaylynn’s 3-year old brother stand up to strangers that were pointing at his 1-yr old little sister because of her large birthmark.
- Understanding that we could make a difference to others that face this situation.
The name of her condition is termed Hemangioma, which is the 'H' in ‘H in the City’ as from the show ‘Sex in the City’, since her treatments were in New York City.
Kaylynn’s 14th laser treatment is October 9th, 2009 at the University of California, Irvine. We will also attend our second Vascular Birthmark Conference hosted by the Beckman Laser Institution that weekend. This conference would make a great segment because it could show footage of Kaylynn’s birthmark laser surgery; showcase other children with various birthmarks; and introduce our physicians (the best in the field of birthmarks), Dr. Waner and Dr. Nelson.
We believe that knowledge is power in sharing Kaylynn’s story with others. We would like to offer our extensive photos, videos, and our personal experience for any show that Oprah produces regarding birthmarks and their removal treatment. Additionally, we truly want to enhance awareness of Hemangiomas, as timing is most critical. Many doctors today offer the worst advice, which is to "wait and see" what happens. Our worst fears would have come true if we took that approach with Kaylynn and our best joy is helping others in our situation.
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