Portia will be 5 years old in July. Myles is 18 months old. Based on early genetic testing, we thought they had Congenital Ichthyosiform Erythroderma (CIE)
, but through recent testing from Dr. Keith Choate at Yale University, it has been determined they actually have ichthyosis with confetti, a very rare autosomal dominate form. Both children were born full term and stayed in the NICU. Both now see Dr. Albert Yan at Children’s Hospital of Philadelphia.
In general they are both doing great and in great health. As most families do, we have very detailed schedules and cream routines. I comb their hair with a pet store lice comb to remove some of the scales on their scalp. They get long, soaking baths at night. We installed a water softener, which is a great help. We scrub them with loofah gloves. We have a DVD player that they watch during the combing, soaking, and bathing. We use humidifiers in their rooms. They drink a lot of water all day. We give them both Miralax to help with the constipation. Portia sees an eye doctor for her eyes, which are fine, we just like to stay ahead of things when we can. Both were delayed in their walking. Myles has yet to walk, but he has started cruising.
In terms of personalities, Portia has always been very sweet, gentle, and loving. As she has grown, she has shown herself to be quite smart and clever with a good memory. She’s an amazing big sister, and always takes care of her little brother, who worships her. She starts kindergarten in the fall and is very excited! Myles is feisty, like most boys. He’s not talking yet, but he yells to get his point across and now that he is crawling, he is having fun exploring every where he goes.
Portia loves to color and draw and is quite good at it, if I do say so myself, and considering she is 4 ½. She also loves to listen to books and sing songs she learns from her hours of sitting in the bathtub. Myles also loves to listen to books. He loves his lovey, DeeDee.
Ichthyosis has its many challenges, and even though having 2 with it is a struggle, we are glad that they will always have each other to understand their special skin as they go through life together. They have already shown themselves to be amazing, loving people. They inspire us every day.
Jolie (Portia’s and Myles’ mom)
West Caldwell, New Jersey
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