Support Our Fight for Health and Hope for 2 AMAZING WARRIORS

Madison McCauley is a 16 year old young lady, living with Trisomy 18 (Edward's Syndrome). She is a Trisomy warrior and is such a light in our world. Madison exudes the meaning of strength each and every day! This girl has grit, determination, stubborness, and so much love in every pore of her body.

Madison has had a difficult time recently. She is in the midst of a long hospitalization in Winston-Salem, NC at Brenner Children's Hospital. Madison has had a significant increase in her medical needs and she is currently in the hospital with a multitude of areas of healing needed in her sweet little body. At this moment, she has a central line in her Jugular vein in her neck providing her with TPN (nutrition in her veins) as her gut is totally shut down and not tolerating any food or medicines. Just this afternoon, Madison had to have chest tube inserted into her chest cavity after her right lung fully collapsed due to a pneumothorax. A pneumothorax occurs when air leaks into the space between your lung and chest wall. This air pushes on the outside of your lung and makes it collapse. Her entire right lung was completed collapsed. In the last month she has been in septic shock from an urinary tract infection/kidney infection and also battled rhinovirus/enterovirus. So in addition to her baseline medical needs of seizure management, g tube feedings, catheterization, all personal care needs, and LOTS of snuggles daily, she now has a central line in the right side of her neck and a chest tube with suction to pull the air out of her chest cavity so her right lung can reinflate and hopefully gain back function. Each day has brought new challenges and her needs change often even throughout the course of one day.

I come to you all today to answer the question that we are being asked by family, friends, and our incredible network of support:

"How can we help?" "What do you need?"

Quite honestly, while in the midst of the medical crisis, we need prayers and love as we were trying to keep Madison alive and work with multiple specialists to help her recover. It's difficult to process ALL that's happening while in the hospital much less think past that point to the realities that continue outside of our hospital room. Our lives feel as though they are put on hold, but the world keeps moving around us, even as we are in limbo.

The most vulnerable yet honest answer to the question of "How can we help?" is through money to help us get keep up on our monthly bills, travel expenses to and from VA to NC, down payments for home modifications such as a ramp/lift, doorway modifications for wheelchair use, bathroom modifications, etc. It is very hard to be so raw and open about what our true needs are, but this is the reality. Even after we get through this current hospitalization (Lord willing), we will be making MANY trips to Brenner Children's Hospital for specialists follow-ups. It is about a 2.5 hour trip each way so each appt is an all day event- which means many more days out of work in the future as well. It is unknown how long we may be here. Home is not even in the discussion right now. Micah and I are both unable to work. I am here in the hospital with Madison in North Carolina and Micah is at home keeping our other 2 kids lives running as smoothly as possible with school, cheer, appointments, etc for our 14 year old and our 8 month old in Virginia. It's a lot to juggle to say the least for us both. We function best when we are together and the divide and conquer in different states is a strain in and of itself.

We also have a friend from our community in the New River Valley that is also experiencing significant medical needs since this summer that will be lifelong. Out of respect of privacy for her and her family I will not go into much detail, however if you live in our hometown I am sure you are aware of our friend's situation. This family has had months in medical facilities and unfortunately is also currently at Brenner Children's Hospital as well. While we have had years to build our network of support, this family is in the beginning stages of their new found medical journey and WE need to build that network of support around and under them as well.

Any donations received in this Go Fund Me with be shared equally between our family and our friend's family. While our medical situations are vastly different, there are many commonalities between what our girl's are currently experiencing and the emotions of being a parent watching your baby (no matter their age) struggle. Both families also have other siblings at home so our hearts and minds are torn between our children and not being able to be both places to meet all of our kids needs. This is hard on the whole family. We share a pediatrician that pours her love and care into our families, we share the school our girls attend, we share physical therapist, and we share many friends in our hometown. It only feels right to share any blessings we are given with them as well.

If you have read this far and feel so inclined, please consider helping us maintain stability for our family and also lend a hand to our friends as well. We need to lift each other up as we are both struggling to find our footing in very uncertain waters with our girl's needs. Please share if are so moved.

THANK YOU from the bottom of my heart. I don't know what we would do without the incredible love and support we are surrounded by each and every day. Every phone call, text, private message is meaningful. I can't always get right back to you or answer the phone based on what all is happening in the hospital room at the moment, but it is read and appreciated. If you have any questions or would like any further information please feel free to reach out.