We Don't Know What Else To Do...

The lovely couple is Lucia and Perry, high school sweethearts and true soul mates.

They dreamed of getting married, having 2.5 kids, a dog, a cat and a house with a white picket fence.


Andy was born August 30, 1988 with multiple medical conditions that required not only the help of the medical professionals but also a great deal of LOVE, HOPE and FAITH




Andy was transferred to a NICU in a children's hospital 80 miles away on the night he was born and spent 3 months in various units and had surgery to put a tracheostomy tube in to help him breathe and a G-tube (tube into stomach) for nourishment.


As Andy grew older...





and older...


and older...


he graduated from high school in 2009 and continued his volunteer job watering plants at the community college until his health no longer permitted it.


When Andy was 19 years old he was truly diagnosed for the first time...he has Muscular Dystrophy. The type of muscular dystrophy he has is called Mitochondria Encephalopathy Disease which affects the production of energy in his cells and causes low muscle tone.


When Andy was 14 years old he had his 2nd scoliosis surgery and because of his declining health and length/trauma of the surgery, he has to use a ventilator with oxygen and pressure support 24/7.
This requires constant monitoring and interventions by mom and dad and the nurses who help care for Andy in the home where he wants to be.

The nurses are paid for by the state and Andy is supposed to have 114 hours a week of nursing care but this does not always happen. The nursing agency is sometimes not able to fill the shifts needed and while this is not unusual...it has gotten much harder since everyone has gotten older and due to mom & dad's health issues.


Andy enjoys NASCAR with Dale Earnhardt, Jr. being his favorite driver but he also thinks that Danica Patrick is pretty "hot". He "surfs" the TV with a special switch adaption remote control and his favorite shows are commentary shows about all kinds of sports on ESPN, Reba, Frasier, Seinfeld and Lifetime Movies (cause they have lots of pretty girls in them). Andy has a great sense of humor and likes to tease and joke around.


Dad works outside the home full time. He has to do all the heavy lifting around the house and yard due to mom's health. When dad is home he provides the majority of Andy's care unless nurses are present. Dad suffers from sleep apnea, diabetes and bad knee's.


Mom's #1 job is as advocate and team leader for Team Andy but she also has held various part time jobs over the years before returning to school. In college she received her associates degree and worked several years as an Occupational Therapy Assistant Licensed Certified until her back gave out. On disability now, she does what she can to help take care of Andy, Perry and the home while continuing to advocate for Andy; schedule his multiple doctors appointments; ordering medical equipment, medications, nutrient supplies, etc.; helping to train and schedule Andy's nurses; and tries to stay up-to-date on the constant changes with healthcare reform, medical trials and helping other families when needed.


Mom has been involved with PTA's at each of Andy's school; was on the founding group of the (now disbanded) Special Needs Inter-agency Council; was on the Division of Specialized Care for Children (DSCC) advisory council for several years; was on the DSCC Medical Advisory Board for 2 years; and the Vermilion County Transition Council for several years.


The past year was increasingly harder with the lengthy illness and death of Andy's grandma who the family was primary caregiver for. In addition, both mom & dad have experienced health issues of their own and are no longer spring chickens. LOL


Mom & Dad have tried to do the best they can to live their lives and provide for their son but with multiple extra expenses of things that are not covered by any insurance and the rising costs of a loaf of bread...financial matters are reaching a sad state.


Two weeks ago the city sewer system backed up into the basement, causing the hot water heater, a/c and furnace unit to be damaged. A water restoration company had to come in with high pressure cleaners, disinfectants, dryer's and dehumidifiers to treat the basement.


The inconvenience of no hot water is something no one wants to have to deal with but with Andy and all of his ventilator and other medical equipment that has to be cleaned to prevent possible life-threatening infections it is more than just an inconvenience.


Andy has intolerance to heat/cold so it is necessary to have a functioning a/c and furnace. The cost of repairs and treatment of the basement were overwhelming to say the least.


We received a call today that we are late on our power bill, we messed up our check book and have had two checks written for repairs returned for NSF's, and mom & dad are overly stressed!!


Mom is at her wits end as she normally feels like she has let dad down because of her disability keeping her from making a good income and the inability to do more things around the house and yard. But when these things happen...it intensifies all the guilt and despair felt normally. Mom suffers with depression and anxiety.


Mom & Dad used to watch that show "Extreme Home Makeover" and loved host Ty Pennington. Whenever something broke in the house that was not in the budget to get repaired and was not a priority for Andy's safety then mom & dad would say "well when Ty comes he will fix that". Then that show went off the air :(


We have a Habitat for Humanity home that we have lived in for 21 years this month...it is paid off, not in the greatest (safest) neighborhood and is 2 stories. When we moved in it wasn't a problem for mom & dad to have their bedroom on 2nd floor. Now because of mom's chronic back pain and fibromyalgia and dad's knee problems it is more of an issue.


All the rooms downstairs (except for Andy's) need paint; the windows, insulation and wiring were all replaced 21 years ago and need updated. I know we have lots of watts or hertz (or whatever those power/wiring terms are) deficits for the type of power usage required with all of Andy's medical equipment and ventilator. So it is probably all over loaded and maybe a fire hazard.


The kitchen needs updated to be more handicap accessible for mom to use as she cannot stand for long as her low back hurts and her right leg goes numb. Mom's balance is not always good and a fall would not be good so for the most part dad does cooking after getting home from work.


Dad has a wonderful care-taking heart and would do anything for mom and Andy but is grieving his mother's death, has health issues and works. When extra stress is added on it just seems like it is a snowball effect causing sleeplessness and getting sick.


Mom and Dad both feel that they are trying to stay afloat but it always seems that whenever they are able to get a little in savings then things blow up. And things had blown up and they hadn't had time to get anything into savings when the basement issue happened so there are no resources available. Checked with homeowners insurance which doesn't insure for floods or water damage of any kind. Tried to get city to pay but their insurance company says that they are not responsible because it hasn't been reported as happening before so there is some goofy loophole that exempts them from responsibility.


Mom & Dad are just both so discouraged and at a loss as to how to get through this latest ordeal. While knowing how blessed they are and being bolstered by the wonderful hugs from their son...the appeal is being sent to you...to donate, share with your contacts, send prayers and send positive thoughts.


Mom (Lucia) is the creator of this page but it was very difficult to express all of this and the only way I could do it was to talk about us in the 3rd person almost as if I was advocating for another family instead of for my own. I hope you understand. Thank You and God Bless.



You posted a new update message:Your help is so appreciated and even more so now... a week ago Perry was installing a hospital bed (he delivers medical equipment) and was on the floor on his knees to put the bed together. Since then he has been in increasing amounts of pain and has had difficulty getting in/out of work/personal vehicle's, chairs, bed, etc. because of the pain his knee has. I have been waiting two months to get into an orthopedic surgeon because I was having trouble with my knee so I offered our primary doctor on Monday that Perry could have that appointment. Luckily the surgeon has a PA and he was able to see Perry and I was able to keep my appt. I guess when Perry was installing the bed kneeling on the floor he irritated his knee which causes the extreme pain and limping. Unfortunately, only fix is rest, elevation, ice and oral steroid pills. Usually he has plenty of sick time left over at the end of the year...but because of his mom's extended illness and subsequent death....he has no vacation time nor sick time. He has applied for Family Medical Leave and while that guarantee's his job...that means...no paycheck!!! Please, please share our page.
3 days ago | Delete Update | View Update
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Organizer

Lucia Huber Stegemeyer 
Organizer
Danville, IL
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