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Jovani

I would like to introduce you to little Jovani Perez.  Born on September 3, 2011, he spent the first 33 days of his precious life in the NICU.  He was born with Eagle-Barrett Syndrome, a rare condition that occurs in 1 in 40,000 babies.  Eagle-Barrett Syndrome can cause urinary tract problems, delays in sitting and walking due to underdeveloped stomach muscles, heart and intestinal difficulties, underdeveloped lungs and renal failure.  Jovani’s most significant health problems are associated with food digestion, bladder problems and renal failure.  For most of the first year of his life, he was unable to digest food and was nourished through a nasal feeding tube.  With adjustments to his daily medications, he is now able to eat baby food and his parents attach a feeding tube through his stomach only at night.  Jovani’s bladder does not empty all the way so he is being assessed for the need of a catheter.  Most significantly, Jovani’s is suffering from renal failure.  His kidneys are currently functioning at only 25% and as his body grows, they will not be able to keep up.  He is in need of a life saving kidney transplant.

But throughout Jovani’s journey there have been miracles.

With this diagnosis, most babies do not survive until birth as the kidneys are responsible for producing amniotic fluid, essential for lung development. Somehow Jovani’s life was sustained throughout the pregnancy and he was born with a strong set of lungs.

During the first week of his life, he was scheduled for a dialysis catheter for his kidneys but he miraculously stabilized and they were able to hold off on this procedure.  This happened again when he was one month old.  This has provided crucial time that has allowed his body to grow stronger and to gain the weight necessary for a kidney transplant.

When Jovani’s parents, Amber and Ben, were given the grim diagnosis of Eagle-Barrett Syndrome, they were given the options to intervene with treatment or to keep him as comfortable as possible.  They were warned how tough this journey would be and that even with a kidney transplant, Jovani would not be cured but would have a better quality of life.  They chose to hold on to the promise of hope and to fight to give their son every possible chance of survival.

From Jovani’s mother, Amber;

It has been a whirlwind of a year, but we feel very lucky… Our faith has definitely been tested in all of this.  We have met so many children who are suffering, who practically live their lives in the hospital or worse yet, families who have lost their children.  It is hard to understand and something that I will never truly understand until I walk through those pearly gates.  But we cling to our faith in God and our faith in His timing and in His will, beyond any earthly understanding.  He sees the bigger picture, we don’t … so we just have to trust Him.  We are thankful for every moment we have with our son, he is truly the happiest little boy ever.”

I would have to agree.  Although our session took place on a chilly fall day, Jovani’s attitude was amazing and he never stopped smiling.  His big sister, Jariana, seemed wise beyond her years and she was remarkable for the love and attention she poured into her brother.  My favorite part about these images is remembering that most of the best expressions were captured as Jovani interacted with his family members standing right behind me.

So here is where you come in.  Jovani’s family is leaving next week for the Children’s Hospital in Boston, ranked number one in Nephrology and Urology in the US and one of the only places where a kidney transplant can be performed on such a small child.  So while the rest of us are picking out Christmas trees, shopping and enjoying the holiday season with our own loved ones, the Perez family will be beginning the process of preparing for Jovani’s transplant.  Earlier in the year, they were referred to the Children’s Organ Transplant Association, a national charity dedicated to organizing and guiding communities in raising funds for such surgeries, who estimated that the out of pocket expenses for the family associated with the transplant will be $55,000. I can not imagine how this must weigh on Amber and Ben while they are coping with the daily struggles of keeping Jovani healthy.  Their family and friends have been holding monthly fundraising activities and so far they have raised $35,000.  I am praying that each person who reads this will consider making a donation to help ease this burden on the family and will share Jovani’s story.  It may be the best gift you give all season.

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