Will’s Story

William Stanton DeNike was born on 3/18/09. He was 9lbs 5.5oz and delivered via C-section, since his older brother was delivered that way too. By the time he was 5 days old he showed the same signs of milk protein intolerance (crying after feedings, mucous and blood in his poop) as his brother. We immediately moved him to Neocate formula, the only one that is truly milk protein free. He responded well to the Neocate, it took his mom some time to recover from it.

At about 2.5 weeks of age he started to show the signs of having Gastroesophageal Reflux Disease (GERD or reflux), like crying during feedings and spitting up. We started him on Prevacid solutabs (7.5 mg/day). A week later we added Zantac at bedtime to help him settle at night. About a month later we increased his Prevacid dose to 15mg/day (7.5 in the am and pm), because he was have trouble sleeping. At this point he settled into eating (~30oz/day) and sleeping (~8-9 hours at night) well until he was about 4.5 months old.

At 4.5 months old he started crying during his feedings. He would burp, then cry, but I could get him to settle down and continue to eat. After a week of doing this he started refusing the bottle completely. He went from eating 30 oz per day to eating 15-18 oz per day. This set off several weeks of doctor’s appointments, tests and procedures at Children’s Hospital. Please see blog posts from August 2009 for more details. After being diagnosed with mild aspiration through a swallow study, we thickened his formula and his eating returned to normal.

On August 20, 2009 Will was diagnosed with Ocular Albinism, or a decreased amount of pigment in his eyes. Please see vision pages for more information on this condition. A month later his diagnosis was confirmed by Dr. Avery Weiss at Seattle Children’s Hospital. In the months that  followed we saw Dr. Weiss several times. On November 30, 2010 Will had an OCT, Optical Coherence Tomography, test that mapped his retina. Normally OCTs are done on older kids, so we did the best we could. He has an abnormal macula and fovea, but he has both, which is good. They are as good as Jack’s. We will do more of these in the future. Please see this blog post for a recap of his most recent visit to Dr. Weiss.



© 2013 · the Will to see · All Rights Reserved


  1. Hi, I’ve followed you from SITS31DTBB site. I have a son with occulocutaneous albinism so am excited to find someone else who understands the vision side of the condition. My son is 7 and while he is legally blind he can get around without a cane or other aids and can read and write like other kids. Looking forward to reading more! Kirsty Russell from myhometruths.com

  2. I’m thinking good eyes for you.
    I’m glad you noticed the problem early. It’s not the same, but my little girl is +4 in both eyes, and we just realized it when she started using a computer and trying to focus on words in books a few months ago at 3 yo. When I took her to the eye dr I was shocked to learn how bad her eyes were and that she could have benefited from glasses at least two years earlier.

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