This past year has been a huge learning curve for me and has served me an education I would never have thought I would receive. At times I am not sure I have wanted it yet it is where we are and we are not giving up.
Lately I have been writing less and posting sporadically on my Page. I am sorry for that, it is that I have been distracted, consumed and under a weight of pressure. My bearings and navigation are now guided by knowledge from reading and searching for answers, to understand the complexities of the human body to find help for my daughter, Hudson.
I have become one of those parents that are submerged in the medical system, overwhelmed and torn inside; wishing and watching my beautiful, intellectual 15 year old daughter, physically deteriorate in front of me. Once an avid equestrian riding 6 days a week from self discipline, now she can barely handle standing in an upright position.
For many years Hudson’s symptoms went undiagnosed, looking at her medical history the events that started to take place over time were looked at individually rather than a whole.
Last February Hudson entered the health system, since then she has been in three different hospitals where she has received testing and then treatments. Not really getting us closer to one diagnosis rather peeling back layers that are revealing many underline conditions.
What we know for sure now is that Hudson was born with a Genetic condition, Ehlers-Danlos Type 3 Hyper-mobility. This means Hudson’s body does not produce collagen in the structure of her soft tissues such as her skin, ligaments, connective tissue and organs. Her body lacks the elasticity and strength to support her joints which causes her to be extremely flexible yet leaves her vulnerable to painful dislocations and constant pain due to inflammation in her body.
We understand that because of the EDS the other conditions surfacing in her body are being magnified. There are many soft tissue structures with-in our bodies that rely on collagen to keep them secure and in place.
We know through multiple CT scans and MRI’s that Hudson has a Chiari Malformation 1. Through the imaging multiple Cerebral Spinal Fluid leaks were located and 2 different procedures were done to close them. A lumbar puncture that gave unexpected results lead to the insertion of a brain monitor which gives more conflicting and confusing information in regards to Inter-cranial pressure.
Such a mix bag of conditions that give overlapping inconsistent information unfortunately makes Hudson’s situation even more complex for her. She has simply been called an anomaly by more than one Doctor.
During this time we have learned that EDS is not a well understood condition here in Canada. As any mother would agree for their child, you want to seek specialists and no matter where in the world that would take us, we will go. We have found Specialists in the USA and we are getting documentation together to make appointments and attain a better understanding of what is going on for Hudson and a hopeful treatment plan.
This is going to be the start of a long journey. No truer words then the saying, it takes a village to raise a child and when you are in a medical mystery a village is an asset. Coming forth for me is huge as I am extremely private about personal issues yet I am keenly aware I cannot do this on my own, the cost of travel and private practice care is beyond my capabilities and we need to prepare financial help to get Hudson the help she needs.
Hudson is a viable young life, she is keenly intelligent and I can see her returning her knowledge by working in the medical industry herself. It is my greatest desire to finally get answers and a plan of direction for Hudson’s future, to offer her hope, understanding and direction.
I have started a FB Page to document the progress of her medical journey, for fundraising to financially help with travel and medical costs and information to promote awareness for this rare genetic disorder.
If you are interested in helping financially or contributing through a talent for Fundraising efforts please join ‘Hope for Hudson’ and contact us, we would be so grateful to hear from you.
It would be the greatest gift to be able to see Hudson grow and thrive as an independent person she desires to be, lets work together to make this happen for her.