Quinn's Home Modifications

Our little hero, Quinn Lucille, was born in March 2016 in Omaha, Nebraska with a rare form of dwarfism called Rhizomelic Chondrodysplasia Punctata, RCDP for short. Children with RCDP experience severe growth deficiency, calcium deposits in their joints, seizures, and sometimes numerous other health issues that can effect multiple other systems in their bodies. Despite the odds stacked against her, Quinn has been living her best life full of joy, happiness, and love from her family and all who know her.

Most recently though, she has been experiencing an increase in her seizure activity that wasn't able to controlled by her usual medications. Just in the past few months she has undergone multiple EEG's and ER visits because of uncontrolled seizure activity. Her parents knew greater measures needed to be taken to help Quinn get some relief. After weeks of fighting, she was finally able to be seen at the Kansas City Epilepsy Center for a EMU (Epilepsy Monitoring Unit). While there, Quinn reached a maximum level/limit of medications without resolution and she was transferred to the main hospital so that she could be monitored closely for respiratory distress as they tried different, stronger medicines. The many meds that were tried did not have any effect on her daily seizure activity, which was devastating to hear. Quinn is currently having around 30+ myoclonic & tonic seizures a day paired with continuous prolonged subclinical (silent) seizures at night in her sleep. During her EEG, she has had to be given many rescue meds due to prolonged subclinical episodes (one was confirmed being over 2 hours long) or her having 5+ seizure clusters within a 20 minute time period.  Watching her fight through each episode is soul crushing, and her family is trying everything in their power to help give Quinn some relief.

The doctors in Kansas City suggested that her family try their best to provide a low stimulation area for her because that seemed to be the only thing that has helped her. To be successful in doing this, her family will need to make some home modifications that will be costly. Quinn’s third birthday is coming up in March and your donation would be the most meaningful gift she could receive at this point of her journey. There are many times people ask how they can help, and this is one. They have had many expenses recently for medications, hospital stays, and travel back and forth from Kansas City. Her mother stays home to care for Quinn full time, and her father works very hard to provide for her family.  As a one income household, her family would be so incredibly thankful for any donations towards this low stimulation area for Quinn so they can continue to provide her with the best quality of life possible. Quinn fights so hard on a daily basis and her family just wants to see their baby girl happy and comfortable. She is truly a light in all of our lives and she deserves to have this opportunity to get some relief.

They would all be so blessed and appreciative for your help! Thank you all for your support for her during this time, and please continue to keep her and her family in your thoughts and prayers.  

You can follow "Quinn's RCDP Journey" on Facebook in the link provided below.

https://www.facebook.com/groups/1024492644307384/about/