L.L. is an adorable 18 month old boy who is diagnosed with hypotonia with respiratory insufficiency and obstructive sleep apnea requiring BiPAP ventilation at night.

In spite of many tests, his specialists are still not sure what the underlying cause of his poor muscle tone is, and they continue to perform genetic and metabolic testing.

L.L. is not able to eat by mouth because he is not able to swallow without aspirating. Because of this he receives all nutrition via a feeding tube.

L.L.’s other diagnoses include developmental delay, enlarged ventricles, and thin corpus callosum. He is unable to regulate his body temperature and requires year-round climate control.

L.L. lives with his parents in Northeast Philadelphia. He has had three hospitalizations and at least 25 outpatient appointments in his short lifetime.

Because of his medical needs, his parents have had to take unpaid leave during hospitalizations, illnesses and for medical appointments. Mom was only able to work one month in the first year of his life.

She has been able to go back to work part-time, but if his nursing shifts are uncovered, she has to take unpaid time off.

Having a technology dependent child means that the family’s budget is stretched even thinner by increased cost of utilities because their household does not shut down, as well as expenses related to his appointments (gas, parking, meals, etc.).

L.L.’s family has gotten behind in some of their household bills as a result of the added burden to their budget. Any assistance That The Barkann Foundation and its Hearts for Heroes team members can offer will be greatly appreciated by L.L. and his parents.

LH who has cerebral palsy and uses a wheelchair, hadn’t slept in a bed in months and her daughter, RH, was struggling at her pre-K school. It was time for a last resort: a homeless shelter.

On Jan. 29, LH and RH went to the city’s homeless-shelter intake center in Center City but were turned away. Not only were the shelters full, but Howell was told the system could not accommodate the personal-care aide she requires 16 hours a day because the lower half of her body is immobile.

R is 4 years old, she has allergies to many foods including milk and eggs which cause asthma and eczema. R is so sensitive to some foods that if she even touches them she will begin to break out and have an asthmatic reaction.

LH has Cerebral Palsy. Before she had R she was able to walk with the assistance of crutches. After having R she became unable to walk and now must use a wheelchair.

R and her mother were living in an apartment with mom’s grandmother until last spring. The apartment the family lived in was in very bad disrepair, Mom made numerous complaints about the apartment to the housing authority which began withholding payments to the landlord until repairs were made.

Unfortunately the landlord was able to evict the family despite their continued payment of their portion of the rent. Mom and R have been staying with friends until recently when they had to leave or the friend would have been evicted for allowing them to stay with her.

After this R and her Mom stayed in a hotel for about a week. Mom got some financial assistance from the Legal Clinic for the Disabled but ultimately the family had to go into the shelter system.

They are currently residing in a Philadelphia shelter and awaiting housing. We have been a part of a team of people advocating for this family. Through this process we’ve learned how difficult it is for people with disabilities to find affordable housing.

Mom is a great self-advocate and took her story to the Philadelphia Inquirer which published this story about her on 3/1/18.

http://www.philly.com/philly/news/politics/disability-homelessness-shelter-overcrowding-affordable-housing-shortage-20180228.html

My name is Charlie and I am 43 years old. My wife, Lynda, and I have 4 children, ages 19, 7, 6, & 4. I am in the USMC Reserves and also have a civilian job. Lynda has been a stay at home mom for the past 7 years, and I am the sole provider for our family of 6.

In late March of 2017, I began experiencing stomach pains that I attributed to stress. Towards the end of April, the pain had increased and I went to the ER, got multiple scans & was diagnosed with diverticulitis.

I was sent home with medication that didn’t help and 3 days later ended up back in the ER. I was again told that it was diverticulitis and sent home with more meds.

At both of these hospital visits, they said that my CEA level (cancer marker) was 22 but not to worry about it. We did some research and found that a CEA of 3 or less is normal.

A few days later while at work, the pain became unbearable. I had Lynda pick me up and take me to a different hospital. A CT scan was done and it looked like a perforated bowel so surgery was scheduled for the next morning.

When they opened me up, they found and removed a tumor the size of a tennis ball. The tumor had burst through my colon and spread cancer cells throughout my body.

Lynda was alone when the surgeon came out to tell her that I had stage 4 metastatic colon cancer. When I woke up a few hours later, I had a colostomy and life changing news to process.

After recovering from surgery, I wanted to go back to work but we had to start chemo immediately to prevent further spreading of the disease. Because of this, I had to go on disability leave for my civilian job and was placed on TNPQ (temporarily not physically qualified) with the Marine Corps.

Our health benefits are through the Marine Corps & I am at risk of losing them as we struggle to prove that the cancer is service connected. I have 18 years with the military, have served 2 deployments, and if I get kicked out now (2 years before retirement), I will lose everything.

Lynda began working again in August & was with the company for 4 months before having to take a personal leave to care for me around the clock as my disease progressed.

Since December, I have been hospitalized 3 times for a total of 4 weeks & have not been able to eat since then. I receive IV nutrients daily instead. I’ve had 2 more surgeries, received 2 new types of chemo as the one was not effective, & will be receiving radiation in the near future.

As you can imagine, the stress from my disease coupled with the pay cut is making it difficult to care for our family. We are trying to keep the children’s lives as “normal” as possible throughout all of this as they are too young to understand what is going on.

Any available assistance is VERY much appreciated!!!

Thank you from the bottom of our hearts!

Lynda and Charlie Seiberlich