Lily’s Bio

This post is also available in: esEspañol (Spanish)

LilyAndMom

Lily and Mommy

Liliana Celeste Tenacio was born full term on November 17, 2003 in Madrid, Spain.  When she was born, she was below the third percentile in size and weight and was very irritable.  Lily was very small and screeched inconsolably for hours on end for over 12 months.  She couldn’t see well, hear well, eat well, digest well, move well, or do any thing well. Her brain was totally unorganized and she was hurting from lack of sleep, an immature digestive system, fear, etc.  She clung to me, her mother, for dear life for as many hours of the day as she could.  We slept together in an armchair for over nine months.  I held Lily face down; this was the only position possible.  She was unable to hold up her head, and her arms and legs were very stiff. She was arching her head backwards all the time.  When she cried, she screamed and was difficult to comfort or console.  We could not take her anywhere because she screamed uncontrollably in the car, the stroller, etc.  Our Lily was fighting for her life.  I knew she was not well, that something was not right. When Lily was two months old, after a series of medical diagnostic tests, we were told our daughter had the worst possible form of brain damage and that she was going to spend her life as a vegetable. She was diagnosed with microcephaly, endocephaly and polymicrogyria. Today, Lily’s diagnosis is Cerebral Palsy and Global Developmental Delay. Due to a virus of the developed world, Cytomegalovirus (CMV), the development of our daughter’s brain was stunted during the first trimester of the pregnancy.  This went undetected during the pregnancy although I had 15 ultrasounds. When we received this news, we knew we needed to start stimulating her brain and to get her as well as possible.
Lily and her parents visit Glenn Doman, founder of The Institutes

Lily and her parents visit Glenn Doman, founder of The Institutes

We read What to Do About Your Brain-Injured Child by Glenn Doman and began working with Lily. We did what we could to stimulate her vision, hearing, mobility, intelligence.  At six months of age, we took the “What to Do Course” and at nine months of age we brought Lily to The Institutes for the Achievement of Human Potential in Philadelphia, for her first evaluation.  She has a severe bilateral brain-injury.  Her midbrain and cortex are severely hurt.  Once we took the course and had a specific home program we began to work more intensively with Lily.
Lily Reading

Lily Reading

Lily’s brain began to get organized and she began to eat better, sleep better, see better, hear better.  By her next evaluation she was showing improvement.  She has improved every visit since we began the program with her.  Now, at 8 years old, Lily sees, hears, eats well, sleeps well, reads, says a few words and understands everything around her in both English and Spanish.  Lily is a happy, healthy, communicative, beautiful little girl. Mobility is her greatest challenge.  She struggles to move on the flat floor.  We  will continue to work with her relentlessly until she can be independent, first crawling and someday walking.  Lily is learning how to grab things and use her hands.  Manual function is another challege for her to overcome.  We hope she will speak to us soon and we will understand her.  She is trying her best to catch up to join her peers.  At IAHP she has a lifeplan.  Our goal as parents is to get her ready for college, to work with her for the next 12 years or more so she can recover. We work with Lily everyday for 8 to 10 hours, working intensively to stimulate her intelligence and mobility as well as provide a specific diet, dietary supplements, and respiratory program prescribed by IAHP.
Lily and Papa

Lily and Papa

Lily loves books, reading, the outdoors, water, spending quality family time.  She giggles spontaneously when she thinks something is fun or funny.  She loves playing with her Papa and thinks her brother can be very silly at times.  She is very smart and loves to communicate with us, letting us know what she wants and likes.  She also has a special relationship with volunteers who collaborate with her program.  She is spending more time independently on the floor now and is very affectionate with family and friends. We are very proud that Lily is our daughter.  She works hard everyday to overcome all of her challenges and wakes up most mornings smiling.  She sets an example for us all to live by. She is LOVE, love in capital letters.  She gives loves and receives love continuously.  She takes our lives to another dimension and inspires us to focus on her ultimate wellness as well as to help other children in our community to get well. Lily’s Well-NESS is a 501 (c) 3 Public Charity EIN#26-3892137
Papa, Brother Emilio, Mommy and Lily

Papa, Brother Emilio, Mommy and Lily