Patrick's Web page

Our son Patrick was born on 1-23-03 as a normal healthy baby boy, weighing 7 pounds 11 ounces. By the time Patrick was 4 months old we realized he wasn't reaching his milestones and that was when this roller coaster ride began. We started our doctoring in Minneapolis, then went to Mayo Clinic in Rochester and when they told us they didn't have any answers for us we decided to return to Minneapolis. The clinics here were still unable to diagnose him, so his neurologist referred us to Atlanta, GA to Dr. John Shoffner to test him for Mitochondrial Disease. We received the information in October 2004 that he indeed has Mitochondrial Encephalopathy Complex I. We were told that the average life expectancy for a child like Patrick is 4 to 10 years old, but we know that continued prayer and faith in God can change that. Patrick has severe hypotonia (very low muscle tone), severe rod-cone dystrophy (they believe his vision comes and goes), seizures and movement disorders which are controlled by meds. and most recently a Vagus Nerve Stimulator, scoliosis, sleep apnea, reflux, dumping syndrome, autonomic nervous system dysfunction and immune deficiencies. He is fed by a g-tube which has saved his life thusfar. He is hooked up to a Pulse Ox, a Feeding pump, C-Pap and/or Oxygen at night. Patrick is a happy, easy going child and is loved by all. Patrick has an older brother Tucker (age 16) and 2 older sisters Abby (age 14) and Sarah (age 9) who are all healthy. We are now seeing Dr. Schimmenti who is a Geneticist at the University of Minnesota and Patrick's neurologist is Dr. Gilles who is out of St. Paul Children's Hospital. Patrick has been a special gift to us and he has shown us more in the 4 years he's been on this earth than what we could learn in a lifetime. He has taught us how important family and friends are and most importantly he has taught us to have faith in God, because he is always there for us.

GOOD NEWS! IF YOU LIVE IN MN AND YOU/YOUR CHILD HAVE MITOCHONDRIAL DISEASE AND WANT TO GET THE TISHCON BRAND OF COQ10 AND HAVE IT COVERED BY INSURANCE CONTACT THE PRAIRIE STONE PHARMACY IN ST. LOUIS PARK AT 952-929-2315. WE WERE ABLE TO GET PATRICK'S COVERED BY MN MEDICAL ASSISTANCE. IT WILL VARY WITH EACH INSURANCE BUT THEY ARE WILLING TO WORK TO GET IT FOR YOU!!!

Journal

Tuesday, November 13, 2007 11:09 AM CST

I am going to redirect you to Patrick's new website. This website will allow you to have an email sent directly to you when the site is updated. Just go to www.caringbridge.org and type in patrickluskey where it asks for the website name or you can type in the address bar
www.caringbridge.org/visit/patrickluskey. If you want to be notified that the site was updated, click the box that asks you if you want an email sent to you. Bonnie

Read Journal History

Hospital Information:

Patient Room: 4236

St. Paul Children's
345 North Smith Avenue
St. Paul, MN 55102
651-220-7101

Links:

E-mail Author: bonniel@starband.net

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Note: The foregoing information was authored by the patient, parent or guardian, or other parties who are solely responsible for the content. Such announcements or their content are not necessarily endorsed by CaringBridge, Inc. or any sponsoring agent.  This information does not confirm that anyone is or was actually a patient at any facility.