Jacob and Emma Kotecki Support fund

     Hello, My name is Cathi Neumann.  I have had the privilege to get to know the KOTECKI family over the last 10 years.  I have been humbled by the way they handled the multiple struggles and heartaches that have come their way daily.  They have two beautiful children, Jacob and Emma.  Both have had medical and developmental challenges since birth. 

     This family KNOWS suffering.  A verse that reminds me of them is :  "We suffer, so when others suffer, we can meet their needs."  2 Corinthians 1:6-7.  This family, amidst their own daily struggles, continually meets the needs of those suffering around them.  

      Currently, Leroy and Beth are in the middle of emotional battles/disturbances with Jacob affecting school, family life and peace in their household.  Jacob is 17 and is diagnosed with  Cognitive Impairment as well as Autism.  He is the developmental age of a 6 year old.  Once puberty arrived for Jake, his sweet demeanor took a radical turn towards anger outbursts .  He means no harm, yet has these emotional outbursts have landed him in inpatient care 8 times over the last 3 years.  Each stay was approximately a week long or more.   Emotionally being  6 years old, these events left him scared and confused.  Many trials and errors with Psych medications, has taken an emotional toll on the entire family.  They are still trying to find the right course of treatment for him.  He is a precious boy that deserves the best care he can recieve.  The family is in need for home care for Jake.  It has become a situation where they need additional support at home in order for Jacob to remain at home. They need a helper that could come into their home for 25-30 hours a week and help take care of him, especially when Emma comes home after surgery.  When Jacob's chemistry is imbalanced is when they see him acting out in aggression.  He often is sent home from school due to his outbursts.  With LeRoy at work, this becomes very challenging for Beth to manage by herself.  The cost of an at home assistant would be approximately $100.00 a day. They have been on a list for state assistance with this care, but the list is long and they still have a ways to go to get this financial assistance. 
     Emma is a energetic and funny 16 year old.  She was born with Jacobsen syndrome. It is also know as 11q terminal deletion disorder. It is a very rare chromosome disorder  with only hundreds of kids diagnosed in the WORLD!!! Jacobsens Syndrome has caused most of her medical conditions.  The day Emma was born, she was rushed away to address her medical conditions immediately.  She also has a bleeding disorder called Paris-Trousseau syndrome.  It is a lifelong risk of abnormal bleeding.  It is a platelet disorder. It places Emma at high risk of serious bleeding with any operative procedures.  This is of great concern as she is heading into yet another heart operation.  
       She has had countless surgeries and procedures over her 16 years.  Her first surgery was in 4/2000, she was 6 months old.  Her second surgery was 1/2001.  On 7/31/2003 she had the Fontan Procedure.  A Fontan procedure is the "big repair", an operation done for children who have abnormal hearts and cannot have their hearts repaired with two pumping chabers (ventricles).  This operation connects the veins bringing back the blood from the body directly into the lung arteries.  After the Fontan operation, the heart is used as a single ventricle that ejects the blood with oxygen in the body.
      In December 2014, Emma had a Cardiac Catheterization to place stents in her heart.  She had a coiling of collateral vessels. 
      The Heart and bleeding issues are the most common issues for Jacobsen's syndrome patients. They present the biggest risk.  She also has had issues with Ovarian Cysts, excessive menstral cycles lasting over 40+ days, Asthma, Kidney issues causing high blood pressure, muscular challenges, ADD, and much more.  
Yet this girl is a fighter, a beautiful and funny young lady.  She loves music, especially the Italian band " II Volo"  The singer Gianluca Ginoble is her favorite.  Emma loves to laugh and be silly, she has a way of bringing out the laughter in us all.
     This Fontan procedure is what the cardiologists feel that Emma needs redone in order to stop the DAMAGE this condition is causing her liver.  It is called a Fontan Reconstruction. She  has been diagnosed with Cirrhosis of the Liver as a result of the first Fontan surgery.  This Fontan surgery causes an alteration of blood flow and there is increased pressure to the liver.  Emma has already had stents placed leading to her liver in hopes of regulation pressure, but thus far it has not helped.  
      The cardiologists feel that this reconstructive surgery is necessary to help  slow down further damage to her liver.  The Surgery will be done at Boston Children's Hospital.  It is an OPEN HEART surgery and Emma will need to go on heart lung bypass , this is a very complex surgery in addition to her HIGH risk of serious bleeding due to her Paris-Trousseau platelet disorder.  Her doctors here in Illinois don't feel like they can tackle this one so the family has been referred to a physcian in Boston.  This cardiologist is planning on surgery to take place May 4th.  The family needs to arrive in Boston by April 28th for pre-surgical testing.
     Beth, Emmas mom, will need to get a hotel room or housing accomidations and stay in Boston for 1 month post-surgery.  They are looking into all housing options.  Hotels are pricey for 30 days, but I know Beth and Leroy will need a sacred space to rest, cry, process and feel their emotions as they walk through this chapter of their families story.  Leroy, Emmas dad, will be there for the surgery and then needs to come back home  work.  Leroy is the sole financial provider for the family.  Two years  ago Beth needed to leave her job as a pediatric nurse to stay home and take care of the daily needs of her children. She needed the income, yet also needed to be available at the drop of a hat to respond to the daily needs at school or home that arise with her children.    
      The family also needs to see if they can hire a professional male caregiver to take care of Jacob.  This will cost approximately $100.00  a day.  Or $600-700.00 a week minimum for in home care for their cognitively impaired teenage boy with aggressive tendencies.  

     They are in dire need for financial assistance.  They have not ever asked us for a cent. They are humble and hard working.   We see them, see their struggles and want to come along side them so that they can not worry about how they don't have the MONEY for any of this.  And they can instead use their ENERGY to focus on loving their daughter and son as they prepare for this very high risk surgery.  
      Would you please consider helping us raise the money to support this family?  It would be a blessing to raise this money prior to April 20th 2016.  They could go into this chapter of Emmas life without the added WORRY about money:(

Current Medical Debt: $11,400.00
Heart Surgery in Boston: approx $20,000.00
Airline tickets to and from Boston: $1000.00
Housing Costs while Emma is recovering and in hospital: $1,500-2000.00
Jacobs' at home care assistant: $700.00/week x 2 months. This totals approx $2,800.00 for just 1 month.  Approximately. Or $5,600.00 for 2 months.

Every Penny of this $40,000.00 is needed.  It will BLESS 4 people in this 1 family.  It will ALLOW for them to keep thier family AFLOAT financially.  And allow their focus and energy to remain on Emma and Jacob and each other as they prepare for Emmas Heart Operation May 2nd, 2016 in Boston.

     So much is UNKNOWN.  In the days that are to come.  May this family CLING onto Habakkuk 3:19- "The LORD GOD is my strength, My bravery.  He will walk me through places of trouble and suffering".

     This financial support would bless not only sweet Emma and Jacob, but also their mom and dad who are emotionally exhausted, financially exhausted and physically drained.  

    For many couples, this amount of constant stressors can tear them apart.  Beth and Leroy have woven their stories of suffering into a beautiful story of faithfulness, perseverance and LOVE.

     And in regards to their Faith, to the CREATOR......They have decided long ago to cling onto HIS truths....To survive, to have HOPE..... And to SHINE HIS light amidst the STORMS that have lingered.

    " The LORD is Good, a Strength and stronghold in the days of TROUBLE.  He knows those who TAKE REFUGE and trust in HIM. " Nahum 1:7

      They are a beautiful and amazing family, We thank you in advance for lifting and lightening their monetary burdens.

Blessings and HOPE in HIM and HIS promises to Restore, Redeem and HEAL. 
Cathi Neumann,