Big Changes in The Ritter House

Since July I have been silent about a new issue with Emma.  Honestly, we needed time to process, pray and figure things out.  For a year Emma has been diagnosed with ABPA (Allergic Bronchopulmonary Aspergillosis) but recently things took a turn for the worst.  Here is a quick overview of ABPA:

ABPA is an allergic reaction or hypersensitivity reaction to a fungus known as Aspergillus fumigatus.  This is a fungi found in the soil.  Although most of us are frequently exposed to Aspergillus, a reaction to it is rare in people with a normal immune system.  However, in certain people, the immune system overreacts to the antigens of Aspergillus fumigatus found in the lungs.  This may damage the airways and result in permanent lung damage.  ABPA most commonly affects people with asthma or cystic fibrosis.

ABPA Symptoms:
* Coughing with brownish flecks or bloody mucous
* Fever
* General weakness
* Elevated IgE (allergy levels in the body)
* Wheezing
* Inability to exercise
* Exercise-induced asthma
* Decline in Pulmonary function
* Increased Sputum

When Emma was 6 years old we were told she had a very high allergy to Aspergillus fumigatus and would have to be extremely cautious with this.  She was treated with a low dose of steroids due to their findings and never spoke of it again.  Two years later, upon transferring to Kaiser Los Angeles in July 2014, we discovered a HUGE spike in her IgE levels.  Emma was put on a high dose of steroids to help bring her numbers down as well as Sporanox (antifungal) also known as itraconazole.  This drug helps to lower the chance of the disease getting worse over time.  Sporanox is normally used for 3-6 months or until the symptoms are gone.  However, Emma has never gone without the symptom in over a year, so she has remained on treatment.

In July 2015, her numbers spiked again, prompting a high steroid treatment once again.  Along with the high steroid use comes another onset of issues.  Many of you have noticed the most obvious side-effect...her puffy face.  This is known as moon face and it is very difficult on Emma emotionally and physically.  Since her skin is tight on her face, it does cause her pain.  The long term use of steroids is also known to cause CFRD (Cystic Fibrosis Related Diabetes).  Over the past 2 months, Emma has had very irregular blood sugar levels and is now being watched for CFRD, which, if she develops this it will require the use of insulin. 

In July we were forced to change clinics due to an insurance change.  This meant we had to leave Kaiser Los Angeles and return to Valley Children's Hospital in Madera.  After fighting with the Pulmonology team to get Emma seen, the doctor that saw her wants to remove all antifungal medications from her!!!  He disagrees with Kaisers care, and feels we will only treat her if she is symptomatic.  EVEN THOUGH SHE HAS BEEN SYMPTOMATIC FOR OVER A YEAR!!  He disagrees with my concerns, thinks she is doing well.  He doesn't feel that her symptoms are serious and treats me like I am being a dramatic mom!

A few days ago, I had the chance to speak with an AMAZING 32 year old CFer who shared her story about ABPA with me.  It is very similar to Emma's, in the fact that is was disregarded and left untreated due to her not having the "typical symptoms".  ABPA made her extremely sick, she ended up coughing up blood and developed bronchiectasis (which Emma already has).  In addition, she ended up in the ICU and nearly died due to hemoptysis (coughing up blood).  I am happy to say she is doing well today, after receiving the proper care. 

ABPA is rare and only affects 2-11% of cystic fibrosis patients.  Kern County has one of the highest Aspergillus fumigatus levels in the United States.  Now please don't misunderstand me...Aspergillus fumigatus is found EVERYWHERE, it is an environmental allergy.  However, Bakersfield has very high levels.  Three doctors have encouraged us to move.  With that being said...we have come to a few conclusions...

Due to Emma's health, we have decided to begin the process to move.  This is a very big step for us due to most of our family living in Bakersfield/Taft.  This is a hard decision for us, but one we feel is absolutely necessary for Emma's safety and future.  We have settled on moving to North Carolina, so Emma can be seen be the amazing team at UNC.  This is one of the top CF centers in the United States.  I spoke with the Cystic Fibrosis Foundation today who praised UNC and was in complete support of our transition.

We desperately need your help to make this happen!!  We have set up a gofund me account to help with moving expenses.  Many of you know, Matthew has been out of work since January and has most recently been working part time.  This is not enough income to make this move happen.  Matthew is in the process of securing work in the Jacksonville area.  

If you have connections to a moving truck, please let us know...the largest expense with moving is a moving truck and the gas.

It is very humbling to come to you and ask for you help...but without it, we will have no choice but to continue with the current care being provided to Emma, which means they will stop the treatment of ABPA, until something bad happens.  The fear of something serious happening to her is more than I can bear.  I have cried more times than I care to admit to when I consider the future Emma will have if we continue living around the Aspergillus fumigatus in Kern County. 

We sold Matthew's motorcycle to help with expenses, but we cannot do this alone.  Please prayerfully consider partnering with us as we strive to ensure Emma's future health.  We are confident that we serve a mighty God who can give us all we need, and He has blessed us with an amazing support system with all of you throughout the world.  Thank you to everyone who has helped us and walked beside us throughout this journey...you are the true soldiers of Emma's Army!

Please visit:

Help us Move for Emma's Health

http://www.gofundme.com/qmasqnu5