Please "Read More" to learn our story...
We have had quite the adventure with our little family. For those of you who don't know our story....
Drew and I (Ally) have been married since 2009 and have Nolan (2012), Maylene (2014), and Chase (2016). Nolan was diagnosed with Type 1 Diabetes in 2015 and that same year I found out I was pregnant with Chase and we discovered it wasn't going to be smooth sailing.
Chase was diagnosed with a rare genetic mutation called COL4A2, which effects the basement membrane collagen throughout the entire body. It effects the strength of his blood vessels, and in-utero he had a brain bleed. This caused a brain defect called Schizencephaly, as well as IUGR, a 13 day NICU stay after birth, Hypotonia, and seizures which started at 7 months old. Today Chase is 3 years old and has Spastic Quadriplegic Cerebral Palsy, Intractable Epilepsy, a Gastronomy Tube, Microcephaly, Global Developmental Delay, Hypotonia and just started on night time oxygen. He has multiple types of seizures, which spontaneously occur, and we treat currently with a combination of high CBD oils and an RX called Trileptal.
Chase has been on CBD oil since March 2018 and was off all pharmaceuticals from June 2018-August 2019 and CBD has been the most effective in maintaining quality of life and seizure control. It has been life-changing but also expensive. We recently started Trileptal in August after the scariest emergency trip due to night time tonic-clonic seizures on July 26. And then, we had another scary ER trip due to the same type of seizure on August 30. At this point we are still fighting for more nursing help and trying to manage our finances well as we care for Chase and our other children.
**We are starting this GoFundMe to ask for help from our friends and family for the following medical expenses:
1. We were able to buy a van for Chase that can be modified for accessibility with a wheelchair lift, and can fit our family!!!!
Lifting him in and out of the car and transporting the heavy adapted stroller in and out of the car is not an easy task. After modifications this van will allow us to transport him IN his adapted stroller because of the lift and brackets. We plan to sell our 2014 Odyssey, which is paid off, and put that money down towards the our new 2017 Transit van. this GoFundMe has helped cover most of the remaining balance of the new van!!!!
**We are asking for any help or prayers as we really can't afford a van payment on top of the monthly CBD oil costs and other medical expenses we have. Currently we are still about $4,000 short of paying of the loan for this new van we purchase.
2. Chase uses a combination of CBD oil on a monthly basis to help control seizures. Since 2018, this has proven to be more effective than any pharmaceutical medication on daily seizure control. This monthly expense is hundreds of dollars a month, and it is a non-negotiable need.
We understand that many cannot help financially and we appreciate prayers and anything you can do to share this GoFundMe with people you may know.
SO many people have prayed for our family, brought us meals and cared for us in various ways over the years. We are beyond blessed by the friends, family, and strangers that God has brought into our lives to encourage and support us. Thank you for taking the time to read about our story and consider helping us. We pray blessings over anyone who reads this. Thank you for loving our family!
The Meister Family