April's Quality of Life

A Mothers Heart:

I don’t like doing this, but I have exhausted all other options. I am a researcher at heart and have looked into grants, loans, etc. and cannot get help with the medical devices and huge medical bills for  my daughter.  I am not comfortable asking for help, nor am I comfortable with just waiting for medical insurance companies to come to their senses about patient care.  My daughter's quality of life is worth saving at any cost to my pride.

My daughter became very ill at a very young age. Her whole life has been full of scary medical challenges. April Marie Dawson, was born April 2, 1978; it was a fantastic beautiful day. At 3 years old she developed Type 1-Juvenile Diabetes and started taking insulin shots. This was in 1980 so  glucose monitoring was done by urine test. It was awful and inaccurate. She started to grow a little but her growth slowed tremendously by the age of 6; she was so tiny. Many tests were done, many diagnoses were given, but no solutions were offered. She became extremely ill and had many medical problems, at 12 they found severe Hypo-Thyroidism and Addison's Disease. Her growth had been so stunted by this point that the doctors did not know if there would be any recovery, even though they had found the cause. She did show some growth and development after a few years of being on the right medication, but it was very little and very late. About 10 years ago she became very ill and severely malnourished. After a long battle with debilitating nausea, vomiting, and the inability to put on weight, they found Celiac Disease. This is yet another autoimmune disease.  in recent months the illnesses, severe fatigue and nausea have returned. there have been several hospital stays in only the last few months. The doctors have discovered several types of anemia and are treating her with B12 injections on an every-third-day basis. This is all in spite of keeping a strict gluten free diet and doing her best to maintain her blood sugars. (The age of her diagnosis was not the real picture of her life. The years of suffering prior to each diagnosis was long and painful).

She has a rare disease called:
Autoimmune Polyendocrine Syndrome (APS) type II (Schmidt’s syndrome) is defined by the coexistence of autoimmune Addison’s disease with autoimmune thyroid disease and/or type 1 diabetes mellitus (1). A fraction of the patients also present with or later develop other organ-specific autoimmune disorders. These include hypogonadotropic hypogonadism, vitiligo, chronic atrophic gastritis, pernicious anemia, autoimmune chronic hepatitis and celiac disease. Here is a link with more information to this disease: http://www.riversideonline.com/health_reference/questions-answers/an00367.cfm

This anemia and other diseases has left her so depleted and weak, that we are now facing more illnesses. She is bed ridden for days, sometimes a full 4 to 5 days, barely upright to even eat or drink. The B12 injections were  started around the beginning of June and we see improvement. It's given us a renewed sense of hope, that there are still solutions. Most anemias can be fatal if not treated and can cause lifelong damages. We are currently trying to determine what damages are lifelong and which are temporary and will fade with treatment.

We have always managed somehow, for many years she was healthy enough to manage with little help. But as time goes on and her body continues to fail her, she finds herself unable to manage on her own at all. Her medical bills and expenses continue to pile up. Over the last 9 months, I have done my best to help her financially so she may focus on getting her health back to a functioning level. But now, I find that I am unable to  financially do much more myself. I have depleted all of my financial resources trying to help her, and without even further medical expenses, she has no chance of doing any better. We need help.

She lives in San Diego, California while I live in Redding California. This is a 13-hour drive or a two-hour plane trip with an additional two-hour drive. The distance makes this all the more difficult, but having her move back here isn't a good idea. She has a team of doctors in San Diego and Southern California that are some of the top specialists in the world related to her rare illness. We have traveled all over the US her entire life in search of doctors who knew what to do or at the very least were not afraid to treat her. When she landed in San Diego, we knew she would be safe.

She must have this insulin pump.  It delivers insulin in small doses, continually throughout her day and also treats any food that she eats. Most diabetics benefit greatly from pump therapy. That's without the added complication of adrenal failure, which causes unexpected spikes and lows in blood sugars. For her, living without this means over 7 insulin injections every day and the inaccuracy and guess work involved in that.    It is critical she gets this machine. It is expensive about $1800 for the machine itself and the monthly maintenance is approx $300 a month. This is a great website to see how it works and what is needed: http://www.myomnipod.com/NewOmniPod/.   Her life can change for the positive.

Another machine not covered by any insurance is the Dexcom G4 CGM (Continuous Glucose Monitoring). It will monitor her blood sugars 299 times in a 24 hour period. This machine is an absolute necessity for her care, to work with the insulin pump. It helps her track her blood sugar levels and what direction they are going. It shows her almost immediately how her food effects her or if her adrenal glands are making her blood sugar rise or fall. This will all but eliminate the very dangerous lows and highs that she so frequently suffers from now.  It is very expensive but can change her life. And is not covered by Medicare or any insurance. It is approx. $1700 and the monthly maintenance again is $300.00 a month for supplies. For more information click here, http://www.diabetespumpcgm.com/dexcom-g4-platinum-cgm/?gclid=CNup_MmTwsYCFZKBfgod-_MB1g
Dexcom (CGM) 

These machines and the B12 injections are NOT just conveniences!   With these diseases; they are a must and I have to ask for help. Keeping her on these machines is the financial challenge. The monthly maintenance is very high, and her medical care costs, hospital stays and ER visits keep adding to the already enormous financial pile. We must be able to continue this type of medical care for as long as possible.   

April is  one of the most amazing people I know. She is courageous about things that happen in her life that most people would immediately close their eyes to. She is only 4”11”, but she brightens up a room like she is as big as the Sun. When people talk to her they are in awe of her gifts. Her deep brown eyes reveal so much wisdom, so much life left to live. Her eyes captivate you and you begin to listen with intent to her story. Her laugh can be heard for miles and becomes contagious to the people that surround her. She is beautiful, confident and intelligent. Always thinking outside of the box. She has compassion for others on a level that I hope to achieve one day. She is such an asset to this world. She has tremendous talent for designing art with flowers and delicious food on all levels. She has created so many beautiful events for people to enjoy and admire over the years. If she could just be healthier, just be able to feel like a human again without the worry about how she is going to get all of the medications, on top of everything else. She deserves to have a chance at life. A chance to experience life without so many ER and Hospital stays; these machines and supplies will help. 

I thank you for listening.Thank you for all your help. 
Most Sincerely,
A mother who will not give up.

This is the minimum amount of injections that she will take within a day.

This is the minimum amount of fingersticks for a blood sugar reading in one day.

This is her daily regime of medications. It's a lot and she's diligent about it.

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Terrie Martin 
Redding, CA
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