Please join the Chamber in efforts in collecting donations for Christopher Patrick Conklin. Christopher is a 14 year old boy from Aberdeen who lives with his mom, dad, 12 year old brother Timmy, his grandmother and his dog Rufus (who never leaves his side). Due to an emergency exploratory surgery in March 2011, ChrisPatrick has become disabled, bedridden most of the time and unable to attend school anymore. ChrisPatrick’s mom is unable to work more than a couple of hours a week now, as he cannot be left home alone like a typical teenager. The loss of income paired with the ever growing hospital and medical bills has left this family in need of help.
Our Goal:
To help ChrisPatrick receive the modifications necessary to live with P.O.T.S.
What is P.O.T.S?
Postural Orthostatic Tachycardia Syndrome is characterized by the body’s inability to make the necessary adjustments to counteract gravity when standing up. It is also referred to as Dysautonomia, which literally means deregulation of the autonomic nervous system. The autonomic nervous system is the master regulator of organ function throughout the body. It is involved in the control of heart rate, blood pressure, temperature, respiration, digestion, endocrine cognitive and other vital functions. Deregulation of the autonomic nervous system can produce the apparent malfunction of the organs it regulates.
What Does This Mean for ChrisPatrick?
ChrisPatrick is 14 yrs old and struggles with some of the most basic functions that healthy people take for granted, beginning with getting out of bed in the morning. Each day and each moment brings new and unexpected obstacles for him. Some of his symptoms may include (differing from day to day) orthostatic intolerance (the inability to remain upright sitting or standing), Tachycardia (extremely fast heart rate), brachycardia (slow heart rate), palpitations, chest pain, dangerously low blood pressure, wide swings/sudden drops in blood pressure, excessive fatigue, exercise intolerance (something as simple as a walk to the bathroom), dizziness, fainting/near fainting, gastrointestinal problems, nausea, insomnia, shortness of breath, anxiety, tremulousness (trembling or tremors), convulsions, frequent urination, cognitive impairment, visual blurring or tunneling, and migraines.
The Needs of the Family to Help Their Son
The family home needs some major modifications to create a safe environment for ChrisPatrick; such as porch railings, a ramp, widening of the front walk way to accommodate a wheel chair. ChrisPatrick’s bedroom is currently on an upper level and this has proven to be very unsafe as he has taken many falls on the stairs and in the shower. With some minor structural changes he can have a 1st floor bedroom and bathroom that is handicap accessible. Also, an adjustable bed is needed to elevate his legs to help with venous blood flow throughout his body. There are also the mounting medical bills due to regular doctor office visits to specialists, X-Rays, scans, MRI’s, blood work, medications and regular trips to Children’s Hospital of Philadelphia. ChrisPatrick needs to move his body on the days he isn’t bedridden to prevent muscle atrophy and possible blood clots. He is too weak to withstand physical therapy. His family is saving for a recumbent exercise bike to use at home and hopes to raise funds to join Meridian Health and Wellness Center in Hazlet for their swimming pool, medical staff on site and physical therapists.
ChrisPatrick’s life from his Mom’s Perspective
ChrisPatrick went into the hospital for an emergency appendectomy and life totally changed. To begin with, it took the doctors 3 days of TRYING to locate his appendix and at 4am on day 3 they finally said “we can’t wait any longer, we have to open him up and do exploratory surgery.” The surgery was successful, they found his appendix posterior and wrapped around and attached to his intestines, it burst during removal. The surgeon assured us our son would be back to 100% within 7 days….YEAH RIGHT! At the seven day mark he wasn’t even waking up much, couldn’t walk and it looked like he either had a stroke or brain damage from the surgery. Now keep in mind I was fighting with doctors the entire time because I know my son’s physiology better than any of them and insisting there was something majorly wrong. Then we began months of tests, hospital stays, ER visits and specialist who called my son a liar and/or mental because there were so many symptoms they couldn’t make the info fit into any diagnosis they were aware of. I had a pediatric neurologist yell at me when I told him I was going above him; right to Children’s Hospital of Philadelphia…his ego did not like that at all!!! This is a man who on two different occassions said my son had to be making it up. Fast forward and CHOP was able to diagnose within minutes. This has been the second life changing diagnosis in my son’s life, so let me tell you, knowing what the monster is you are facing is actually a relief. Now you know what it is; now you can face it head on. Except Dysautanomia morphs and every day is a different challenge. ChrisPatrick is 14 and can’t stand up for more than 3 or 4 minutes, can’t balance, can’t walk farther that the front door to the car, his heart can’t regulate, his blood pressure can’t regulate, he falls and needs X-Rays for possible fractures, his body temp can’t regulate, his blood pools in his legs because it doesn’t know how to pump against gravity, this causes oxygen loss to the brain causing memory loss, extreme chest pains, he can’t digest food well, has severe abdominal pain and he has headaches everyday. He is afraid to fall asleep because his epinephrine levels and nor-epinephrine levels aren’t controlled which causes night terrors he can’t wake up from. He can’t walk up stairs, after 2 to 3 stairs it looks like he has congestive heart failure and has to sit down or he passes out. When he does fall asleep, he can sleep for 36-40 hours so we have to pick him up and get him to eat / drink / use the bathroom as he is falling back to sleep. I can’t work because I have to spend my life a foot behind him to catch him when he falls or loses consciousness. He has a wheelchair and a mobility chair. I have a handicap parking pass for him and have to apply for SSI disability benefits for him. He can’t attend the Culinary School or become a chef like he has had his heart set on for years. He can’t go to school / hang out with his friends / do anything like the typical kid. I have a stack of medical bills and prescriptions that could bankrupt a 3rd world county, but can’t work to pay them off. There is NO CURE and the only treatment is lots of salt and fluids to increase blood volume and to lower the risk of passing out. Other meds are all a guessing game, but most POTSY’s have such sensitive systems from the syndrome, the meds make things worse. My son questions me about his future and I have no answers for him.
We will be collecting donations for ChrisPatrick and his family on:
Date: Tues., Dec. 06th
Time: 12:00 – 1:30 pm
Location: The Buttonwood Manor
845 Route 34
Matawan, NJ 07747
732.566.6220
If you are unable to attend this event and are interested in donating to this family, please make check payable to “Cindy Conklin” (ChrisPatrick’s mother) and mail to the Chamber office at PO Box 522, Matawan, NJ 07747
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