Fundraising for Logan Clarke – Pierre Robin Syndrome, Williams Syndrome

Logan`s story:

Logan Clarke was only 14 months old when he was diagnosed with Pierre Robin Syndrome – a syndrome that usually affects the face and formation of bones, mouth and throat. He sometimes struggles to calm down and all that can calm him is certain people and music, he lives for music.

Shortly thereafter, at 15 months, a “tongue tie” operation was performed where the little skin under the tongue was cut off to enable him to drink better, but it was found that his tongue was enlarged at the back which made him feel nauseous all the time. With the sinus that he also has (narrowed airways), it has been difficult for him during feeding as he choked all the time. At times he would turn blue from one sip of milk, even his own spit.

All his milestones were delayed, he struggled to eat, and refused to continue the moment he started choking. A chromosome test (Fish test) was done by the Pediatrician which showed that Logan has Williams Syndrome (WS).

WS has been found to be the opposite of autism in many ways, but has many of the same symptoms and behavioral tendencies. Logan is just over-friendly and very social. He can say words which is a blessing, as many children with WS are “non verbal” up to the age of 10 and older.

He was sent for, and still has to do many tests. One of these was an “echo” where they found a stenosis (such as a narrowing in his descending aorta). He did a barium swallow, where they found an obstruction in the throat and also a vascular ring that presses against a vein which causes his own body to “strangle” him.

During an operation they discovered more veins running in places which were never picked up on scans. Logan has to go for another heart surgery where the stenosis and a bypass of these veins must be relayed, and is awaiting a date. Meanwhile, for the rest of his life, there is a chance that he could have stenosis all over his body, very serious heart conditions are linked to WS. He still has unexplained stomach pain and nothing can be done about it.

Logan will be depended on someone to take care of him for the rest of his life. He suffers from anxiety attacks, and has OCD and ADSD.

Please support our bracelet initiative to raise funds for Logan, your contribution will give him a chance at a better quality life.

Alternatively, please consider a donation. Any and all donations welcome. REF: Logan Clarke.

Fundraising for Logan Clarke