Posted on December 28, 2017
Hello, everyone! We are very sorry for not updating sooner, but it has been a busy, fulfilling, and humbling year.
To start, in June Derek and Christina bought their very first house! Although Derek is no longer physically able to do the home repairs he loves to do, family and friends have been there to help in any way possible. (….and Derek still directs everyone, at every turn of the repair!) Derek and his family went to Punta Cana, Nickelodeon resort and they had a blast! (As we all know the voice of SpongeBob passed away from ALS earlier this year.) Derek and Christina also went Skydiving…kicking another thing off the bucket list! Derek turned the Dirty 30 on October 14th and we threw him a party, surrounding him with friends and family and lots of love and support. Not long after his Daddy’s Birthday, Aiden turned the Great 8….so we had another fun-filled party!
Unfortunately, December 6th Christina had brain surgery. Thankfully, her brain tumor was benign, as this family has the weight of the world on their shoulders. Although she continues to heal successfully, Christina is unable to lift/transfer Derek. Because of Christina’s current health issue, and Derek’s declining health, Christina’s Sister, Nicki has been hired (thru an agency) to be Derek’s caregiver. It is a great source of comfort, to have someone that loves and supports Derek care for him, instead of a stranger. Unfortunately we only have limited, short-term grant money to pay the agency, and it is a lengthy process to get a Medicaid Waiver. Although we will continue to have co-pays, bills, etc….providing Derek with the absolute best in-home care, is the most important reason we continue to raise funds!
Unfortunately the BEAST that is ALS has reared its ugly head, and has begun to ravage this once strong, fit, virile man. Derek is non-verbal at this point (although he always makes his point known!). Derek also has a feeding tube, and his doctor recommended he be NPO (nothing by mouth). He is at very high risk of choking, and aspiration pneumonia is the #1 cause of death for people living with ALS. Derek has a cough-assist machine and also uses a suction machine, to help with any excess mucous and while brushing his teeth. Derek’s ability to walk, navigate stairs, etc. has also quickly declined. Because he is a high fall risk, Derek has been Rx’d a walker. He has also recently been fitted for a custom wheelchair (W/C). By far, the most dangerous, physical symptom Derek is experiencing is failing lung function. ALS is a motor-neuron disease that “kills” ones’ ability to use their muscles. The main support for breathing is your diaphragm….which is a muscle. Because Derek’s O2 is low and his CO2 is high, he is fatigued much of the time. Derek has begun to use his breathing machine (Bi-Pap) more consistently, but the damage that has already occurred, cannot be reversed. As you scroll through the newly posted pictures, you will see the effect ALS has had on Derek’s body, but you will also see his big smile remains the same!
Please continue to donate, so this wonderful ALS Warrior Family, has the ability to pay for out-of-pocket handicap-accessible products/medical expenses and in-home care! Again, our goal is to keep Derek OUT of a nursing home or Hospice house, so please DONATE as much or as little as possible….and as soon as possible. Also please note that the amount stated on this page, does not reflect the true amount. The amount shown is the amount raised since the fundraiser began, it does not show deductions for medical supplies already purchased. Currently we are down to just a few hundred dollars.
We thank you, and kindly ask you to share this update! Wishing everyone a happy and HEALTHY New Year! -------Nicki & Roxanne #Screwals