Jack playing soccer at night

Life after diagnoses:

We had all of our home's windows and vehicles tinted as well as lowered the wattage of the light bulbs to 40 watts throughout our home.

We began to learn how Jack could lead a " normal life" with the aide of protective gear, sunscreen and a UV meter.

As we live in the southern US, the heat is always a concern with all of the clothing and gear Jack must wear outdoors.

As parents, we aggressively sought others diagnosed with this defect to network and share information

We have met many new friends and gained information from all over the world attending camps, such as Camp Sundown and Owl Patrol in the UK.

A day in the life of Jack (a typical day):

6:30am-7:00am Jack wakes up (slowly) gets dressed with longs sleeves and pants, then sunscreens (we call it sunscream as he hates it) from head to toe.
7:15am leaves for preschool
7:30am arrives at preschool but before he can get out he must put on gloves, coat, and his "London"hat.
7:30-12:30 stays at preschool. When children go outside Jack must stay in. Anytime they must change buildings he has to put on more sunscreen and his protective gear.
1:00-2:30 plays at home and takes a nap
2:45 leaves with mom to pick up his big sister and brother from school.
3:30-sundown dinner, plays indoors
Sundown- Jack gets to go outside and play, where he enjoys playing on his trampoline, riding his bike and lots of sports. Then it's bath and bedtime.

As you can see we do everything we can to make Jack safe and to provide him all the experiences a normal 4-year old has.

About Jack:
If you ever meet Jack indoors you would never know that he has a rare genetic defect called XP. He is just like any other 4 year-old who loves to run and climb on just about everything. He loves to play with his older brother and sister and loves music.

Jack doing what he likes best

Jack and Mom on the London Eye

How did we find out he had XP?
When Jack was about 9 weeks old we took him outside on a March day for about 30 minutes. When he came in, his face turned red and then began to blister. By that evening he was covered in blisters and by the next day his face had crusted over and resembled the skin of a course brown football. It took nearly 3 weeks to heal. We were told by the doctors that he is "probably just highly sensitive to the sun" and he will outgrow it and to "just keep him inside."

After begging doctors to consider XP and test Jack, we finally got our answer (after 10 months of waiting for the test results)." It is positive", the geneticist said with tears in her eyes, "Go home, cover your windows, change your light bulbs and don't let him leave home."