Lucas’ Fund, Life with an Overgrowth Syndrome

Lucas will be 2 years old in July.  He is a very sweet, energetic and happy little guy.  Lucas was born with a rare condition called PIK3CA segmental overgrowth syndrome.  The condition causes different parts of the body to grow larger than normal.  His left leg and kidney are affected so he needs abdominal ultrasounds and AFP blood draws every 3 months until he turns 8 years old to monitor for the development of Wilms tumors.  He also wears a small wedge lift in his right shoe to help even out the difference in his leg lengths.  His right leg is also affected and is covered in a large port wine stain, which is a pink birthmark caused by overgrowth of blood vessels under the skin.  Lucas’ overgrowth had been relatively stable until recently.  He suddenly began to develop round hard growths under the skin on both legs.  He started out with 2 lumps and in a matter of days the growths increased in size and number and began moving up the legs.  We were able to get an emergency appointment with his specialists at Phoenix Children’s Hospital and they noticed a tiny lump could be felt over his lower spine. The doctors are concerned that with the rapid onset and growths appearing from his legs up to his lower back that there could be internal growths near or around his spinal cord.  We were instructed to watch him closely for loss of bowel and bladder control as well as leg muscle weakness.  Lucas needs an MRI of his spine to check for growths near his spinal cord.  He also needs to have one of the growths surgically removed and additional tissue biopsies done.  The cost of the MRI, surgery, and biopsy is $16,683 and needs to be done as soon as possible.  The cost of his quarterly abdominal ultrasound is $1,600 and is scheduled for August.  Our family lost our health insurance so we are trying to pay for Lucas’ medical care out of pocket.