Prayers for PJ Medical Fund
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Preston Jordan Tucker was born on Monday January 5th, 2015. His parents are Taylor DeClerck and Tim Tucker, of Taylorville, ...Illinois.
He was diagnosed with Sturge Weber Syndrome a few days after birth.
Sturge Weber is very rare, and every case is different. The syndrome itself can cause brain malformations, glaucoma, overgrowth of limbs and seizures. It is not hereditary and cannot be seen on any tests done while pregnant.
The first sign of Sturge Weber is the Port Wine Stain birthmark. Port Wine Stain is dilated blood vessels that never stopped forming, causing you to be able to see them on top of the skin.
Preston has a "Port Wine Stain" birth mark covering 3/4 of his body. The whole left side of his face and back. Both arms and legs as well as his chest. Having it on his entire left arm caused him to have what's called Capillary Overgrowth. Basically what that means is his left arm is twice the size of his right arm and his left thigh is chubbier than his right as well.
He also has glaucoma in his left eye. The doctors at Children's Hospital in St.Louis caught it in time before it did any damage to his eye sight. He will still need glasses but we will take that over being blind!
His MRI's as of right now show that the left side of his brain is smaller than the right, causing him to be weak on his right side. He has started therapy and they said they are amazed at his progress and how good he is doing!!
May 18th was his first seizure. He has what's called Apenic Seizures. He rarely shakes or twitches, he just stops breathing. His entire face turns purple as well as his lips. We have him on a pulse oximeter when we are all sleeping since he doesn't move while seizing it's our only way of knowing if he's having one.
Our goal is to have PJ seen at the Hunter Nelson Sturge Weber Center in Baltimore Maryland. Where patient's visits are tailored to meet the individual needs and clinical services are cooridinated accordingly. Diagnostic testing can be performed to evaluate and effectively treat his needs, by physicians who specialize in their fields.
Thank you in advance for all the love, prayers, and support shown to our "lil man"!
He was diagnosed with Sturge Weber Syndrome a few days after birth.
Sturge Weber is very rare, and every case is different. The syndrome itself can cause brain malformations, glaucoma, overgrowth of limbs and seizures. It is not hereditary and cannot be seen on any tests done while pregnant.
The first sign of Sturge Weber is the Port Wine Stain birthmark. Port Wine Stain is dilated blood vessels that never stopped forming, causing you to be able to see them on top of the skin.
Preston has a "Port Wine Stain" birth mark covering 3/4 of his body. The whole left side of his face and back. Both arms and legs as well as his chest. Having it on his entire left arm caused him to have what's called Capillary Overgrowth. Basically what that means is his left arm is twice the size of his right arm and his left thigh is chubbier than his right as well.
He also has glaucoma in his left eye. The doctors at Children's Hospital in St.Louis caught it in time before it did any damage to his eye sight. He will still need glasses but we will take that over being blind!
His MRI's as of right now show that the left side of his brain is smaller than the right, causing him to be weak on his right side. He has started therapy and they said they are amazed at his progress and how good he is doing!!
May 18th was his first seizure. He has what's called Apenic Seizures. He rarely shakes or twitches, he just stops breathing. His entire face turns purple as well as his lips. We have him on a pulse oximeter when we are all sleeping since he doesn't move while seizing it's our only way of knowing if he's having one.
Our goal is to have PJ seen at the Hunter Nelson Sturge Weber Center in Baltimore Maryland. Where patient's visits are tailored to meet the individual needs and clinical services are cooridinated accordingly. Diagnostic testing can be performed to evaluate and effectively treat his needs, by physicians who specialize in their fields.
Thank you in advance for all the love, prayers, and support shown to our "lil man"!
Organizer
Roxann Brewer Miloncus
Organizer
Taylorville, IL
