Complications from brain overgrowth can include hydrocephalus and/ or brain stem compression. A key sign of M-CM is progressive brain overgrowth, resulting in macrocephaly (larger than normal head). MCAP / M-CM is a multiple malformation syndrome causing body and head overgrowth and abnormalities of the skin, vascular system, brain and limbs. His syndrome is very rare, only affecting about 350 (known) people currently, worldwide. Louis Children’s Hospital, with Megalencephaly- Capillary Malformation (or MCAP / M-CM). The doctor explained to us that each of these “bonuses” were not necessarily concerning if they had occurred on their own, separate from any other health concerns, however, the fact that he had so many different concerns at once meant that he likely had some sort of “genetic syndrome” They recommended genetic testing.Īt 3 months old he was diagnosed via genetic testing at St. The fun thing is that Alivia will see someone with something different about them and since then has responded, “It’s just their bonus! Lots of people have bonuses! That’s what makes us so special in God’s eyes. To make it more understandable, to an 8 year old, these differences became known as “bonuses”. Most of the questions were “Why?” Why does my brother have this or that? I simply explained that each of us are unique… God made each of us special, each of us different. Shortly after Luke was born and there were discussions about his medical conditions, Luke’s sister, Alivia, became a bit concerned and began asking a lot of questions. At nine months old, after strong recommendation from the doctors, Luke had his fingers surgically separated. This can reach either part way up or nearly all the way up the toe.
#WEBBED HANDS AND FEET SKIN#
Most commonly the second and third toes are webbed or joined by skin and flexible tissue. There are various levels of webbing, from partial to complete. In humans it is considered unusual, occurring in approximately one in 2,000 to 2,500 live births. This is normal in many birds, such as ducks amphibians, such as frogs and mammals, such as kangaroos. It is characterized by the fusion of two or more digits. Webbed toes (or fingers) is the common name for syndactyly affecting the feet (or hands). Luke has webbed toes! He also had two webbed fingers on his larger right hand. Luke’s right leg is longer than his left leg as well, he has to have a shoe lift for the left side to make his legs even. This means that it involves only one side of the body from the head down. He has what is known as Complex or Total Hemihypertrophy (hemi). His right ear is bigger than his left, his right cheek bigger than the left, his arm, hand, leg, foot and even right booty cheek are all slightly larger on the right, than the left side. The right side of Luke’s body is larger than his left side. *What we now know, after Genetic testing, is that all of his “discolorations” are Capillary Malformations and an abnormal amount of blood vessels.
Luke still change colors on his legs and arms, sometimes they are purple, sometimes more of a blue. Although Luke does have hypoglycemia or low blood sugar. At first it was thought that this was because he had low blood sugar but later we learned that actually the discoloration was due to acrocyanosis (which is an over exaggeration to hot and cold) it’s harmless. When he was only a few hours old it was also discovered that his hands, legs, and feet were a dark purple- bluish color. He also had a large portion of his forehead that would change colors to a darker red when he got upset, it has also faded to a much lighter red. At birth he had a dark reddish-purple birthmark (what was believed to be a port wine stain) between his eyes, under his nose, and on his bottom lip. Luke was born with what the Doctors thought was a Port Wine Stain- that covered a large portion of his body. He explained to me that Lucas was born with some “Very interesting characteristics”. After a while, I was moved to my room, and I (along with my family) impatiently waited to see him for the first time. I had a C-Section and was recovering from an adverse reaction. When Luke was born, the doctor took him away quickly. He is 7 years old and in the second grade. Lucas is one of the children who received a $1,000 Rise Family Grant from CNF.
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