A milestone birthday is sweet celebration published in The Courier News August 12, 2007

I am writing this letter in celebration of a year that I thought would never end. On Aug. 5, our son, Jake Joseph Whitenight, turned 1 year old, a birthday that one year ago never seemed possible, a milestone that we were told would never come.

One year ago, my husband Paul and I, along with our three boys, were anxiously awaiting the birth of our fourth child. Jake Joseph Whitenight was born Aug. 5, 2006. Jakey came to us with much love and anticipation, but without any warning of the medical complications that were coming with him.

Anyone who has heard of our son Jake knows that he has a story. Over this past year, our family has come to the staggering realization of just how many people know about Jakey's medical history, know his story and call him their own.

From birth, we were quite certain that Jake would have hearing issues, since one of his outer ears was only partially formed and had no ear canal opening. When all of Jake's anomalies finally came to light, it was quite a list. It began with three holes in his heart, one enlarged kidney, one polycystic kidney, an iris coloboma of the left eye (a cleft in the iris), bi-lateral microtia (malformation and/or partial formation of the outer ears), atresia (no ear canal), stenosis (partially formed ear canal), severe/profound hearing loss and trigonocephaly (skull deformity).

Concerning genetics, we were originally told that he had Treacher-Collins Syndrome. When that test was negative, doctors were unsure. C.H.A.R.G.E. Syndrome was a possibility, and maybe Cat Eye Syndrome. No genetics team knows why he has all of these problems; he simply does. Paul and I have said right from the start that he's just "Jakey." Our little family one-liner is that he has "Whitenight Syndrome."

My first encounter with our insurance company was the first time that I was informed that the operations that Jake would need in the future to construct him an ear were cosmetic and not covered.

I was also told that Jake's hearing aids would not be covered by insurance and that hearing was not a medical necessity. Those words sparked a fire in my soul that still burns with intensity today. Until that very second, I had absolutely no idea what an uphill battle I was about to wage, or that I was truly joining a war already more than six years in the making.

This war comes in the form of a bill named Grace's Law, which would require health-insurance coverage for hearing aids. The very minute I read the legislation, I signed the online petition; the Web link was sent along with a personal request to everyone we knew, asking for support. We asked for all to sign the petition and comment "FOR JAKE WHITENIGHT" as a way of tracking the growing signatures.

To our surprise and pleasure we watched the signatures grow from where we signed at No. 1,746, and we still track the numbers -- well over 6,000 strong now. Please visit www.graceslaw.com for all of the bill's information and to sign the petition or write a letter to our legislators. We are not alone in trying to get this legislation passed.

Once word of Jake's story went out, it quickly spread like wildfire. It went from our immediate family to everyone they knew. The news traveled to neighbors, from block to block, telephone line to telephone line, and quickly leapt the boundaries of Manville, Somerset County and New Jersey.

It's amazing how quickly news travels in a small town. What was even more amazing were the things that transpired along the way, as the people were talking and the wheels were turning while the word was spreading. It was amazing.

Through word-of-mouth contact, three events were held here in Manville in Jake's honor. The efforts put forth by the M.Y.A.L. (Manville Youth Athletic League), Manville Reformed Church and Kelly LaMonica of Gold Canyon Candles spread the awareness of Jake's plight to unbelievable heights. Truly, the people involved in these three endeavors reached out past the boundaries of our town to families, groups, organizations and businesses throughout the county and beyond.

To every organization, business, foundation, family and person who has taken part in Jake's plight, we express our most sincere appreciation and gratitude. Whether you said a prayer, signed a petition or contributed in another way, we are grateful beyond words. We have been completely overwhelmed with the love and support that everyone has shown us.

One year ago and faced with so much pain and despair, I never felt so alone. One year later, I have seen goodness in people I never knew was humanly possible. There are so many people that have walked into our lives in the past year, it is truly impossible to count each one.

This is, at best, a humble attempt to thank all of you. We celebrate this year with great news. Many of Jake's very serious issues are resolved. The three holes in his heart have closed on their own and require little follow-up. His kidney issues have resolved without the need for surgery. Jake's CT scan this year has revealed that he will not require neurosurgery.

We also received wonderful news that although Jake's one eye is weaker than the other, he does have sight in both eyes. Genetic testing has unveiled no abnormalities! With the blessing of Somerset County's early intervention program, Jake is developing at an age-appropriate pace and is quite the little charmer. He has taken on his family role as one of the Whitenight boys with pride and conviction.

Jake has a long road ahead of him, filled with many reconstructive surgeries, during which his doctors will construct him an ear, two ear canals and two eardrums. We are well on our way to making sure that these operations all will be possible, and with God's help, a success. Someone once said that you raise your children to give to the world. In the lives that Jake has already touched, in the ways that so many people have changed and come together since he was given to us, it is clear to us what a gift to the world he already is. He is our treasure.

Lynn and Paul Whitenight


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