holmfamily1992
New member
Hello to everyone!! Just a quick update and I will get to the important stuff!! We received our sons Fecal elactase test back and he doesnt need enzymes right now!!! YIPPY!! We started his Palmozyme treatments and his ACT's. Wow, we are up to early in the morning!! All his meds take about and 1 hour and 15 mins.
Anyway, As a family, we have set 5 goals.
1. Find a way to get a care center closer to us
2. Organize a Great Strides walk closer to us
3. Start a chapter in the Great lakes region
4. Get our area schools involved in the fight
5. Help to find a cure
Ironically, my sisters bosses wife is the marketing Director for the CF Foundation here in Michigan. She met with them on our behalf to find out how we can go about doing all these things.
We need to show the foundation that there is a need in Northern Michigan. As is shows right now there are only 3 people in Northern Michigan who have CF and I know that is not true. Just in my town alone there are at least 4. So eiher they are getting their care outside the state or not getting care at all. We have only 3 care centers in Michigan. All of which are down state. People in the UP either travel to Wisconsin or south for treatment.
We have to drive at least 3 hours away for his doctor appt. I know this may not seem far for some of you who may drive further but with gas prices what they are, getting a care center closer we help greatly!!
So what I need from anyone who may know of some one in Upper Michigan (UP) or Northern Michigan area, or even your own family, if you are interested in joining our crusade please let me know. In order for the CF Foundation to get involved we need to show that there is a need for the first three things on my to do list.
Thank you for any support or advice or help you can give.
Tina, Mother of 8
Anyway, As a family, we have set 5 goals.
1. Find a way to get a care center closer to us
2. Organize a Great Strides walk closer to us
3. Start a chapter in the Great lakes region
4. Get our area schools involved in the fight
5. Help to find a cure
Ironically, my sisters bosses wife is the marketing Director for the CF Foundation here in Michigan. She met with them on our behalf to find out how we can go about doing all these things.
We need to show the foundation that there is a need in Northern Michigan. As is shows right now there are only 3 people in Northern Michigan who have CF and I know that is not true. Just in my town alone there are at least 4. So eiher they are getting their care outside the state or not getting care at all. We have only 3 care centers in Michigan. All of which are down state. People in the UP either travel to Wisconsin or south for treatment.
We have to drive at least 3 hours away for his doctor appt. I know this may not seem far for some of you who may drive further but with gas prices what they are, getting a care center closer we help greatly!!
So what I need from anyone who may know of some one in Upper Michigan (UP) or Northern Michigan area, or even your own family, if you are interested in joining our crusade please let me know. In order for the CF Foundation to get involved we need to show that there is a need for the first three things on my to do list.
Thank you for any support or advice or help you can give.
Tina, Mother of 8