“God, who foresaw your tribulation, has specially armed you to go through it, not without pain but without stain.” – C. S. Lewis

I'll never forget the first medical event at my childhood home. Amidst sirens blaring and the frantic, raised voices of my parents, I saw my sister's tiny body rushed to the back of a large, white truck bearing red stripes all around. Large doors flung shut that threatened to block my view of my little sis. I remember peering inside as they pricked her fragile, pink skin.

I was merely 7.

That event was the beginning of a road of discovery for my parents as their little one battled grand mal seizures, cardiac rhabdomyomas and more. Eventually a diagnosis of Tuberous Sclerosis was given. A syndrome fraught with a myriad of symptoms: skin abnormalities and facial disfigurement, seizures, cognitive disabilities, multi-organ involvement.

Now at 37, Dara Starr Ogbevoen is no longer that vulnerable, tiny infant. She's overcome speech and learning difficulties. She's suffered from multiple seizures that literally rocked her world and any onlooker with resolve to maintain normalcy. She's faced pain and blackouts from hemorrhaging kidneys with humor and grace. Received results from CT scans that portray tuberous masses in the brain, lungs and kidneys with peace. She's a nurse, a wife, a mother. All of which were in major contrast to medical prognoses spoken over her at the time of diagnosis.

Dara's name  literally comes from the Hebrew verb, "to live".  I smile to consider God's hand in my parents naming her. They had no idea what the future held for them and their tiny tyke when she was placed in their arms back in 1982. But God did.

Tuberous sclerosis is a rare genetic disorder that causes benign tumors to develop in various parts of the body. Signs and symptoms vary widely, depending on where the growths develop and how severely a person is affected. Many  experience serious disabilities.

"To Live". It was as if God whispered her name to my parents at her birth.      Despite a genetic mishap  located on chromosomes 9 and 16 that would threaten her life many times over, her God-given destiny was LIFE.

Although there is no cure for tuberous sclerosis, and the course or severity of the disorder cannot be predicted, treatments are available to manage symptoms. Symptoms such as mitigating occurrences of seizures, hemorrhagic incidences and the like.

A crippling, but not fatal, symptom that Dara has also faced since 5 years of age are the facial angiofibromas. These are overgrowths of normal skin components and yet they do not become cancers.  However, they are red, vascular in nature, and ever pose a daily scenario of embarrassment and the grappling  of answers to "What's wrong with your face?"

There is hope, however. TS patients can undergo laser treatments and FDA off-label topical procedures that can underscore the facial growths or resolve them almost entirely. Thus, the need to raise capital. Houston, TX is the city of hope for many TS patients who seek freedom from the agonizing reminder of their genetic abnormality every time they look in the mirror or hear a hushed, rude whisper in public.

Under the skilled hands of Dr. Friedman who is board-certified by the American Board of Dermatology, Dara will undergo general anesthesia and undergo hours of facial surgery with specialized lasers and medical therapy. She will need to remain in the Houston area for 1 week post-op and will rehabilitate in my home in Dallas for another week. 

Dr. Friedman is our choice due to his medical pedigree and proximity. He is the Medical Director of Dermatology & Laser Surgery Center in Houston, Texas. Educated in dermatology at the New York University School of Medicine, where he served as chief resident and was twice awarded the prestigious Husik Prize for his research in dermatologic surgery, he also completed a one-year fellowship in dermatologic laser surgery, Mohs micrographic surgery, and cutaneous oncology at the Laser & Skin Surgery Center of New York. He has trained under some of the most experienced and prominent dermatologists in the world. A Clinical Assistant Professor at the Department of Dermatology at University of Texas Medical School and a Clinical Assistant Professor of Dermatology at the Weill Cornell Medical College, Houston Methodist Hospital, thus at the heart of field-breaking insight. He is also on staff at Texas Children’s Hospital and Memorial-Hermann Hospital-Texas Medical Center. His repertoire of excellence is laden with featured speaking engagements, awards in research and the author of over 90 medical articles. He also co-authored the book Beautiful Skin Revealed. Dr. Friedman has been a featured speaker of the American Academy of Dermatology, the American Society for Dermatologic Surgery, the American Society for Laser Medicine and Surgery, and other national and international audiences. He served as Co-Chair for the Cutaneous Laser Surgery Section of the 2009 and 2011 Annual Conferences of the American Society for Laser Medicine and Surgery, and as Program Co-Chair for the 2015 ASLMS Annual Conference. He has been selected for the Best of Cutaneous Applications Abstract Session Award at the 2016 ASLMS Conference. He has also served as Chair of the Public Service Committee for the American Society of Dermatologic Surgery.
Dr. Friedman has been recognized as a leading physician and researcher in the field and has also been involved in the development of several new laser systems and therapeutic techniques now commonly used throughout the world.

To avail ourselves of such therapeutic  facial procedures like this that are rare across the globe for TS patients, upfront costs not covered by insurance are required. Payment plans are not available. In addition, there will be travel, recovery, follow-up and loss of income during rehabilitation expenses. All of which are but a drop in the bucket for a chance to put her best face forward, but a financial hurdle nonetheless.

Dara is seeking this chance "to live" normal. To face the day without the handicap of facial growths that threaten even a normal conversation with a stranger, an awkward interlude with a child, or a humbling discussion during a job interview. Most of us never face rejection due to a disfigured face. She does. Whether by those near or strangers afar, it's a common day occurrence. With this procedure, she is keenly aware of freedom from shame. Freedom from rejection. And as she so poignantly shared on the phone the other day freedom to pursue new open doors.

Would you join us in raising the funds needed to bless Dara with this life-changing opportunity? We are desperately seeking funds to be secured no later than end of May.

We need you.

Now.