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  Jake

 

 

Jake was born on September 13th, 2003.  I had a normal, healthy pregnancy and we didn’t know there was a problem until the morning after Jake was born.  Initially, the pediatrician noticed his large fontanelle (soft spot) and she thought he had a cleft palate.  There ended up being many more physical anomalies in addition to feeding issues and he was transferred, without me, to a different hospital where he spent the next 18 days in the NICU. He was poked and prodded and tested for various syndromes.  We were released from the hospital without a diagnosis once he started gaining weight and eating on his own.  We were told there is definitely “something wrong”….the doctors just didn’t know what.  The unknown was the worst. 

At 6 months old, we thought that Jake started having seizures and this became “the final piece of the puzzle”.  Jake’s geneticist remembered reading something about Pallister-Killian Syndrome (PKS) and seizures and he decided to do a skin biopsy.  Needless to say, within 2 weeks we had our diagnosis.

Jake is globally delayed.  He has hearing and vision impairments.  He got his first set of hearing aids when he was 3 months old and his first pair of glasses when he was 2 ½ years old.  He is non-verbal, but will inconsistently sign for more, eat, and drink.  He is non-ambulatory, but he loves to kick and roll from side to side.  Jake has seizures, and has most recently been suffering from reflux and apnic/seizure episodes out of sleep with significant de-saturations in his oxygen.  Despite these episodes, he is more alert, happier and more responsive than ever!  He loves kisses, tickles, being with family and of course, his vibrating snake toy.

Mike and I just feel like the luckiest parents in the world to be blessed with an angel on earth!  Jake is here for a reason.  We see it all the time - he changes people.  People hear his story and see what he goes through each and every day and it helps put things in perspective.  Jake simply radiates "PURE UNCONDITIONAL LOVE" in every sense of the phrase.  The tears of worry and despair from when he spent his first weeks in the NICU have transformed into constant tears of joy we now share with an extended network of family and friends.  Jake’s 4 year old brother and sister (Brandon and Kayla) are just waiting for Jake to “get big like them”J.  They love him to pieces!

I love Jake with all my heart and just know there are endless possibilities for him.  There is so much more that he will accomplish - it will just be on his terms at his own pace! 

To learn more about Jake, visit his website at www.jakezane13.com

- Nicole Zane (Jake’s Mom)

 

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