PLEASE, I NEED HELP NOW TO GET BETTER MEDICAL CARE
Donation protected
Matthew and Kathy Lopez
I’m 32 years old and have been living with Duchenne Muscular Dystrophy, a progressive neuromuscular disease. The Doctors said I wouldn’t see my 18th birthday. I’ve battled through 5 surgeries and 25 hospitalizations. I’ve been counted out with each new obstacle put before me. I’ve persevered through it all, and I’m looking forward to the next act of my life. I was diagnosed at the age of 6. I’ve been in a wheelchair since the age of 9 and ventilator-dependent since 2007. As I get older, living with this disability becomes more challenging, both physically and financially and there is currently no cure. My medical needs can no longer be met on Maui and rents have skyrocketed, pricing us out of the place we’ve called home for the past 30 years. Me and my mom (Kathy) are moving to the Phoenix area where we both can get more help relating to my illness, We’ve put a down payment on a modest home there and will need help with home modifications to make things easier for me. Also, it could take up to 90 days for my medical insurance and benefits to kick in leaving us with out of pocket expenses. The time for this move is now because in a few years I may not be able to.
Why do we need the money?
Most of the doctors that have cared for me these past 25 years, have either retired, or are about to. My last hospitalization in September 2018 proved that I need more specialized care from doctors knowledgeable in Duchenne Muscular Dystrophy. Finding nurses with trach and ventilator experience to care for me in our home has been extremely difficult. I then am without necessary skilled nursing care for long periods of time. My mom has been my primary caregiver for the last 25 years and needs more help with me. Due to these challenges, my medical needs can no longer be met here on Maui. The Barrow Institute in Phoenix, Arizona specializes in Neuromuscular diseases like mine. Phoenix also has much more nursing care options and resources to help us better deal with my illness day in and day out.
Therefore, my Mom (Kathy) and I are moving to the Phoenix area. We are in escrow on a modest home that will close by the end of January. We’ll need to make some accessible modifications for me. A ramp to enter the house, widening my bedroom doorway, and remodel the bathroom. All those modifications are costly; we’re fortunate to have Pat Finney in our lives now, and he can do some of the work, but we would still need to purchase the materials and so forth. In addition to the home renovations, waiting for medical insurance and nursing benefits to kick in could take up to 90 days. This means all my medical and equipment expenses will be out of pocket until then. We’ll be traveling by airplane with two companions, one being a nurse, required by the airline, to make the long journey. We have saved some money over the last few years, but the move alone will take most of it.
We’ve tried not to ask for any financial help our whole lives. We are asking in a time of need for everyone to spread their Aloha as little or as much as they can. We will forever be grateful for our time here on Maui, the friendships we have made, and the memories that will never fade. Now is the time to make this move. In a few years I may not be able to. We humbly ask for your help to make our dream a reality.
(Me with Service Dog Sophie visiting at the hospital)
Matthew:
I’ve done a lot to make it this far in life. But I’d be kidding myself if I didn’t acknowledge Kathy. Her mission and desire to give me the best care a son could ask for, while putting her needs on the back burner is a real tribute to how great a mother I have. I feel like we strive to make each other better every day. Through the trials and tribulations, we’ve gone through together, we have developed an admiration for one another that is extraordinary in a mother/son relationship. Without her amazing care and my positive outlook, I would have been gone a long time ago. Our Maui family and community have also helped me become the man I am today. This best encompasses my mom.
Kathy:
A close mother, son relationship is an understatement here. Matthew and I have spent 99% of the last 32 years together. We have been through so much. From the day he was born, he has given me so much joy. His diagnosis of Duchenne Muscular Dystrophy at 6 years old left me devastated. But Matt never let that get him down. Never let it get in his way. He charged head on to achieve his goals, seeing everything through to completion with the highest of standards. Never accepting defeat, only asking for help as a last resort. When we faced tough financial times, he got himself a job delivering newspapers in his wheelchair. His sharp math skills kept the household budget to the penny, thus enabling us to get ourselves back on track. His positive outlook on life has kept me going, even when I had lost all hope. Last year I met a wonderful man, Pat. He is the one I have waited 25 years for. My other children, grandchildren and even pets are truly fond of him. We are ready to make the move to Arizona to be together as a family.
Matthew:
What are my current abilities?
Due to pressure sores over the last few years, I’m in bed most of the time on an air mattress, only getting in the wheelchair for special occasions and doctors’ appointments. Currently, I can only move my fingers about a quarter inch, so I am no longer able to use a computer mouse or drive the wheelchair myself. I can move my eyes and mouth well. I use a voice-activated program to use my computer, send text messages, skype, and make phone calls.
(Me with my two nephews Matthew & Mason & my niece Malia)
What kind of person am I and what have I achieved given my circumstances?
I’m a smart, funny, patient, caring person with a positive attitude and outlook on life who people like to be around. I grew up in Kihei, Maui and was able to do a lot in my younger years. I volunteered for Kihei Little League for seven years announcing baseball games, reporting the scores and statistics to the Maui News. In 2002, I was named Volunteer of the Year by Maui Mayor, Kimo Apana. That same year, I was 1 of 9 recognized by The Maui News as People who Made a Difference that year in their community. I was chosen Muscular Dystrophy Association’s “2003 Hawai’i State Goodwill Ambassador”. Some of my duties included public appearances and speaking engagements to better educate people about muscular dystrophy and let them know what services I received with their donations. During my term as Goodwill Ambassador, I received a commendation from Hawaii Governor, Linda Lingle. In a note to me, she wrote: “ You are a true champion. Adversities do not hold you back from accomplishing your goals and pursuing your passions. You are the epitome of perseverance. You are truly a role model, and I commend you for your commitment and determination in proudly representing our state”.
In 2004, I was invited and went to Washington, DC for the National Youth Leadership Conference For People With Disabilities. I attended seminars and realized the importance of using my platform to help others with disabilities get what they need. I have also tutored several kids over the years in math, reading, spelling, and general studies. In high school I was the announcer at track meets and even earned a varsity letter. I graduated high school with honors and earned an Associate of Applied Science degree in Business Technology and Information Processing Specialty from Maui Community College. I had an internship with the Pacific Disaster Center and tried to find a job after that, but my physical abilities prevented me from accomplishing that.
Feel free to contact us directly with any questions.
For the Go Fund Me account, we are using this email: [email redacted]
Mahalo Nui Loa,
Matthew and Kathy Lopez
OUR GOAL IS $40,000
I’m 32 years old and have been living with Duchenne Muscular Dystrophy, a progressive neuromuscular disease. The Doctors said I wouldn’t see my 18th birthday. I’ve battled through 5 surgeries and 25 hospitalizations. I’ve been counted out with each new obstacle put before me. I’ve persevered through it all, and I’m looking forward to the next act of my life. I was diagnosed at the age of 6. I’ve been in a wheelchair since the age of 9 and ventilator-dependent since 2007. As I get older, living with this disability becomes more challenging, both physically and financially and there is currently no cure. My medical needs can no longer be met on Maui and rents have skyrocketed, pricing us out of the place we’ve called home for the past 30 years. Me and my mom (Kathy) are moving to the Phoenix area where we both can get more help relating to my illness, We’ve put a down payment on a modest home there and will need help with home modifications to make things easier for me. Also, it could take up to 90 days for my medical insurance and benefits to kick in leaving us with out of pocket expenses. The time for this move is now because in a few years I may not be able to.
Why do we need the money?
Most of the doctors that have cared for me these past 25 years, have either retired, or are about to. My last hospitalization in September 2018 proved that I need more specialized care from doctors knowledgeable in Duchenne Muscular Dystrophy. Finding nurses with trach and ventilator experience to care for me in our home has been extremely difficult. I then am without necessary skilled nursing care for long periods of time. My mom has been my primary caregiver for the last 25 years and needs more help with me. Due to these challenges, my medical needs can no longer be met here on Maui. The Barrow Institute in Phoenix, Arizona specializes in Neuromuscular diseases like mine. Phoenix also has much more nursing care options and resources to help us better deal with my illness day in and day out.
Therefore, my Mom (Kathy) and I are moving to the Phoenix area. We are in escrow on a modest home that will close by the end of January. We’ll need to make some accessible modifications for me. A ramp to enter the house, widening my bedroom doorway, and remodel the bathroom. All those modifications are costly; we’re fortunate to have Pat Finney in our lives now, and he can do some of the work, but we would still need to purchase the materials and so forth. In addition to the home renovations, waiting for medical insurance and nursing benefits to kick in could take up to 90 days. This means all my medical and equipment expenses will be out of pocket until then. We’ll be traveling by airplane with two companions, one being a nurse, required by the airline, to make the long journey. We have saved some money over the last few years, but the move alone will take most of it.
We’ve tried not to ask for any financial help our whole lives. We are asking in a time of need for everyone to spread their Aloha as little or as much as they can. We will forever be grateful for our time here on Maui, the friendships we have made, and the memories that will never fade. Now is the time to make this move. In a few years I may not be able to. We humbly ask for your help to make our dream a reality.
(Me with Service Dog Sophie visiting at the hospital)Matthew:
I’ve done a lot to make it this far in life. But I’d be kidding myself if I didn’t acknowledge Kathy. Her mission and desire to give me the best care a son could ask for, while putting her needs on the back burner is a real tribute to how great a mother I have. I feel like we strive to make each other better every day. Through the trials and tribulations, we’ve gone through together, we have developed an admiration for one another that is extraordinary in a mother/son relationship. Without her amazing care and my positive outlook, I would have been gone a long time ago. Our Maui family and community have also helped me become the man I am today. This best encompasses my mom.
Kathy:
A close mother, son relationship is an understatement here. Matthew and I have spent 99% of the last 32 years together. We have been through so much. From the day he was born, he has given me so much joy. His diagnosis of Duchenne Muscular Dystrophy at 6 years old left me devastated. But Matt never let that get him down. Never let it get in his way. He charged head on to achieve his goals, seeing everything through to completion with the highest of standards. Never accepting defeat, only asking for help as a last resort. When we faced tough financial times, he got himself a job delivering newspapers in his wheelchair. His sharp math skills kept the household budget to the penny, thus enabling us to get ourselves back on track. His positive outlook on life has kept me going, even when I had lost all hope. Last year I met a wonderful man, Pat. He is the one I have waited 25 years for. My other children, grandchildren and even pets are truly fond of him. We are ready to make the move to Arizona to be together as a family.
Matthew:
What are my current abilities?
Due to pressure sores over the last few years, I’m in bed most of the time on an air mattress, only getting in the wheelchair for special occasions and doctors’ appointments. Currently, I can only move my fingers about a quarter inch, so I am no longer able to use a computer mouse or drive the wheelchair myself. I can move my eyes and mouth well. I use a voice-activated program to use my computer, send text messages, skype, and make phone calls.
(Me with my two nephews Matthew & Mason & my niece Malia)What kind of person am I and what have I achieved given my circumstances?
I’m a smart, funny, patient, caring person with a positive attitude and outlook on life who people like to be around. I grew up in Kihei, Maui and was able to do a lot in my younger years. I volunteered for Kihei Little League for seven years announcing baseball games, reporting the scores and statistics to the Maui News. In 2002, I was named Volunteer of the Year by Maui Mayor, Kimo Apana. That same year, I was 1 of 9 recognized by The Maui News as People who Made a Difference that year in their community. I was chosen Muscular Dystrophy Association’s “2003 Hawai’i State Goodwill Ambassador”. Some of my duties included public appearances and speaking engagements to better educate people about muscular dystrophy and let them know what services I received with their donations. During my term as Goodwill Ambassador, I received a commendation from Hawaii Governor, Linda Lingle. In a note to me, she wrote: “ You are a true champion. Adversities do not hold you back from accomplishing your goals and pursuing your passions. You are the epitome of perseverance. You are truly a role model, and I commend you for your commitment and determination in proudly representing our state”.
In 2004, I was invited and went to Washington, DC for the National Youth Leadership Conference For People With Disabilities. I attended seminars and realized the importance of using my platform to help others with disabilities get what they need. I have also tutored several kids over the years in math, reading, spelling, and general studies. In high school I was the announcer at track meets and even earned a varsity letter. I graduated high school with honors and earned an Associate of Applied Science degree in Business Technology and Information Processing Specialty from Maui Community College. I had an internship with the Pacific Disaster Center and tried to find a job after that, but my physical abilities prevented me from accomplishing that.
Feel free to contact us directly with any questions.
For the Go Fund Me account, we are using this email: [email redacted]
Mahalo Nui Loa,
Matthew and Kathy Lopez
OUR GOAL IS $40,000
Organizer
Kathy Slama Lopez
Organizer
Kahului, HI