Morgan is 9 years old and a beautiful young girl with the biggest heart and so much to give. She loves to read, be outside, and play soccer.
For about 2 years now we have been taking Morgan to appointments and having tests ran to determine what the cause of her unusual bruising is. We have learned that Morgan has what is called Linear Morphea which is an Auto Immune disease. Morphea is not very common approximately 2 in 10 million people are diagnosed with it and the severity of Morgan's Morphea makes hers even more rare. Morphea affects the muscles and then works its way inside the body to the bones and hardens the organs. Morgan has already started to lose some movement in her right hand and feels some numbness near her elbow area. Left untreated Morgan would not only become crippled but would eventually die from the hardening of the Organs.
Morgan started out with several blood tests which came back normal so her Doctor repeatedly told me that she was fine and there was nothing that was wrong. After having heard enough from me he referred us to DeVos Children's Hospital and they were unable to help us out with anything. They sent us to "the best Dermatologist" in Grand Rapids who treated Morgan over the last year or so and prescribed 2 different creams that we tried and did not work at all so we discontinued their use and received a reference to the University of Michigan.
At U of M Morgan saw 4 different Doctors who spoke to us and took many photographs of Morgan. It was repeatedly mentioned that they have not seen this disease this bad in a child of Morgan's age.
Morgan's treatment is being labeled as high risk because of the combination of medicines she needs to receive but we are left with no other options.
Morgan's treatment will involve placing a port in her chest area so that they can access her without continuing to poke her every time she receives the steroid treatments or has to have blood drawn. She will be receiving a steroid called prednisolone and this will be given to her over a 3 day period and done through her port. This will require her to be in either Ann Arbor or Grand Rapids.
She will also be receiving Methotrexate which is a drug that is commonly given to patients who have cancer and are receiving Chemo. Morgan will be getting this as a weekly injection done here at home.
We are on what is being labeled as a 2 year plan. The hope is that these medicines will put Morgan into what is labeled as remission. Her body will never be rid of this disease but we can pray that she will be in remission. With the above treatments Morgan will also be receiving Vitamin D and Folic Acid Vitamins and may also have to receive UVA light treatments. These treatments can only be done in Ann Arbor as there is no one else around that has the light.
Morgan is feeling some pain in her stomach as well as her back and has at least 8 spots on her body where the Morphea has made its presence. U of M will continue to monitor these areas as well as all of her blood, bones, and organs to make sure that they continue to function properly and that we are not developing any other problems along the way. Morgan is in good spirits overall. She was asked to take part in a study and definitely wants to take part in it. She knows that it is the only way for the Doctors to learn more and be able to help other families so that they will not have to live through this nightmare that we are currently experiencing.
There will be many expenses incurred along the way in treating Morgan and insurance does not cover them all. There will be many trips to U of M and Grand Rapids that we will be making and possibly hospital stays as we just do not know how Morgan's body will react to the treatment. We will be in Ann Arbor at least once every 2-3 months if not more often and I will do anything and everything within my power to ensure that baby girl is being taken care of. We will also be missing work taking Morgan to her appointments and taking care of her when she is sick from the side effects of the medicines as well as from her immune system being suppressed.
I can not express how greatful and thankful we are for the family and friends in our lives as well as strangers who hear of Morgan's story and are able to help us out. We have a strong faith and believe that their is a reason God has laid this on our family and we trust in him that he will provide for us the things we need to take care of Morgan.
This page will be regularly updated by myself or Amber Mead so that everyone can be made aware of progress and the current treatments for Morgan.
Thank you so very much for all of your thoughts, prayers, and support during this time.
With all our Love,
Elizabeth, Jason, William, and Morgan
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