I wish Help w/ new vehicle for baby’s many medical appointments out of town
I never wanted to be in this position. Our family owns two vehicles. One in need of some repairs before returning to the road and one on it’s last leg. Some may say, “Not a big deal. Go buy a new car.” As simple as that sounds, that is not currently my reality. In February my fiance gave birth to our beautiful baby boy, Ethan. Ethan came into this world very quickly through what Drs called a “Traumatic Birth” as he had to be suctioned out and his heart rate dropped so low that they nearly had to c-section him out of Mom in an emergency.
After Ethan arrived a heart murmur was discovered. This led to an EKG that discoverd tumors within his heart called Rhabdomyomas. This discovery then led Drs to do an MRI. The MRI showing his brain littered with hard calcified rocks known as Tubers which ultimately revealed that Ethan suffers from a lifelong, un preventable, rare disease called Tuberous Sclerosis Complex (TSC). TSC is a rare disease that affects 1 in 6,000 (1 million worldwide) Our Ethan is definitely one in a million! TSC can cause tumors to grow on any and all of his vital organs. Since the age of 2 months he has been at risk for seizures which from our understanding is very common with this condition. The seizures could be mild to severe and life altering. Ethan could live a pretty normal life, or he could end up on the Autism Spectrum or develop a host of other mental/emotional/physical disorders as a result of seizures. Ethan is currently just over 3 1/2 months and already has 5 specialists throughout the state that he sees. Most of which are located in Royal Oak MI near Detroit. We do monthly EEG’s to Beumont Hospital which is 91 miles one way. As Ethan grows, so will his list of appointments. On top of all that travel, we commute 50-75 miles daily between my work and Sons school (multiple trips some days when it is 12 miles away one way) we do this in an non fuel efficient year old jeep named Jerry who suffers from a window that has a burned out motor and busted track, a back hatch window that doesn’t latch, electrical issues out the wazoo and ball joints that break more than you would imagine. Jerry also has a smoking problem from the engine and makes an awful sound when turning due to an eventful run in with some ice and a guard rail a few winters ago. A cracked windishied which is a ticket waiting to happen.
He also lacks 4wheel drive which is a whole other issues when it comes to winter commuting in Michigan!
So as it stands, Mom (Casie) is now staying at home as Ethan needs direct care and is preferred to be cared by someone with CPR training and can be overly attentive and able to recognize seizures. After his diagnosis I took on new employment in search of better medical insurance for Ethan. I’m happy to say that job is going well and I am already up for a promotion! However, trying to meet the day to day is hard as it is. Trying to get caught up on behind bills and not fall further behind on others has me mentally & physically exhausted and anxiety ridden. I’m working and selling my blood twice a week to cover it all and make ends meet as much as I can. So I’m not in a huge position to take on a large car payment as we try to stay afloat and look for residence closer to work and school. My pride hurts that I am here but there is nothing I won’t do to help my family. This is our greatest time of need. Every time we need to take the kids anywhere the anxiety of something going wrong leaving us stranded is real. Thank you for taking time to read this.
If you want to learn more about TSC there is a lot of info available on it online. Check out the Tuberous Sclerosis Alliance.
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- Member : FatherOfTwo
- Member Since : August 15, 2019
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- Type : Need
- Wish is for : Family
- Category : Financial
- Location : St Charles, MI, USA
- Wish Made : August 15, 2019