Martina was diagnosed at birth with Klippel-Trenaunay syndrome. The doctors told us it was a rare genetic disease and our child is 1 in 100,000. KTS is brought on by a gene mutation and is not passed down through generations. She has had multiple hospital stays, more blood work done than most adults, 3 surgical procedures, the earliest at less than 2 months old and numerous ultrasounds, and MRIs.
KTS is a condition that affects the development of blood vessels, soft tissues, and bones. The disorder has three characteristic features: a red birthmark called a port-wine stain, abnormal overgrowth of soft tissues and bones, and vein malformations.
Most people with Klippel-Trenaunay syndrome are born with a port-wine stain. Martina has over 5 port-wine stains. This type of birthmark is caused by swelling of small blood vessels near the surface of the skin. Port-wine stains are typically flat and can vary from pale pink to deep maroon in color. They are not harmful to others, they are not a rash, and they are not contagious. In people with Klippel-Trenaunay syndrome, the port-wine stain usually covers part of one limb. For Martina, her stains are on the right side of her body.
The affected area may become lighter or darker with age. Occasionally, port-wine stains develop small red blisters that break open and bleed easily. We call them “blebs”. Klippel-Trenaunay syndrome is also associated with overgrowth of bones and soft tissues beginning in infancy. Usually this abnormal growth is limited to one limb, most often one leg. Martina has over growth of 2cm, so far, on the right side of her body.
The abnormal growth can cause pain, a feeling of heaviness, and reduced movement in the affected area. If the overgrowth causes one leg to be longer than the other, it can also lead to problems with walking. Martina is currently facing this struggle and is in phyical therapy.
Malformations of veins are the third major feature of KTS. These abnormalities include varicose veins, which are swollen and twisted veins near the surface of the skin that often cause pain. Veins deep in the limbs can also be abnormal in people with Klippel-Trenaunay syndrome, like Martina.
Other complications of Klippel-Trenaunay syndrome that Martina has faced so far include a type of skin infection called cellulitis, swelling caused by a buildup of fluid (lymphedema), and internal bleeding from abnormal blood vessels.
Martina will never outgrow her KTS. She will have it for the rest of her life. We will face many difficulties and challenges for the remainder of her life.
We need your help. We will use your donations to get to and from appointments in Chicago (over 600 miles to and from where we live), meals and lodging during hospital stays and visits, medical imaging, procedures, and medical accessorites including, orthotics, compression stockings, and braces. We will also use your donations to help pay off Martina's current medical bills from numerous appointments and procedures.
We would like to collect as many donations before Mighty Martina's next vascular malformation clinic at Lurie Children's on November 15th, 2017. Anything you are able to help donate to our family is greatly appreicated and we are forever thankful for MIGHTY support.
#mightymartina #KTSawareness #ilovesomeonerare
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