Giving Kids a Second Chance

Recipients

Juan is a recipient of the Mulliganeers and today is an accomplished musician. His music is a reflection of his El Salvadorian roots combined with life experience. A life that includes cleft palette surgery, losing his legs, being orphaned.  His music is a reflection of those who have changed the course of his life and the lives of all the children at Nuestros Pequenos Hermanos (NPH) homes.

Follow the YouTube link below to see Juan perform at the Mulliganeers 15th Annual Golf Outing 2009:  http://www.youtube.com/watch?v=lfeQTlrBfIY

Juan Manuel's perseverance in the face of enormous challenges, the fostering of his talents by NPH, the outpouring of generosity by so many Chicagoans for this young man; makes this a story that should be transpired through his music, and told in film.  To learn more visit the website www.thesoundofgratitude.com.

Event Recipients



Kylie Arnold

Kylie Arnold, age 2, was diagnosed with malignant brain and spinal tumors four months ago. Shortly after the diagnosis the family met with an oncologist and learned about their daughter’s cancer. Primitive Neuroectodermal Tumors (P.N.E.T) are rare tumors and their incidence is not well defined.

Several procedures and tests followed the diagnosis. The first round of chemotherapy was administered inpatient. Kylie was admitted to the hospital for a week in September. In October, Kylie had her first blood transfusion.

Her parents have used up all their time off with pay and their financial need is due to growing medical bills. Additionally, with the amount of time off without pay they need to take to care for their daughter, their day to day living expenses are a problem.


Alicia Cygan

Alicia Cygan, 14 years old, was diagnosed with papillary carcinoma. She underwent surgery to remove her thyroid. After surgery her biopsy determined that the papillary carcinoma had traveled to her lymph nodes.

Alicia needed two treatments of radioactive iodine and two body scans. The first body scan reveled that the lymph nodes involvement is within the perimeters of where they would like it to be. She will have another body scan soon and follow up visits for the next three years.

Her mom, Kathleen is a certified nurse assistance working part time, and her dad, Dennis is a full time carpenter. Alicia has one sister, Naomi (8 years old).

The need comes from the costs above and beyond what their insurance covers plus the cost of the insurance premium. Additionally, Alicia’s mom is paid hourly and takes time off without pay to take her daughter to her medical appointments and care for her.


Alexander Maximus Hilton

Baby Alexander Maximus Hilton was diagnosed with hemophagocytic lymphohistiocytosis (HLH) days after being baptized. HLH is an extremely rare disease of the blood and bone marrow and it is always fatal if not caught early and treated aggressively. HLH attacks all major organs, including the brain. Alex’s pain started with his bones, then as the disease spread, it compromised his spleen. Because the disease prevented his bone marrow from making red blood cells, his liver tried to compromise, and as a result swelled to the point where his abdomen could hardly contain it.

Alex fought on. HLH shut down Alex’s breathing and he was intubated. Fluid accumulated in his pleural sac and Alex’s body was invaded by a deadly fungal infection that compromised his entire body and threatened his life. At seven weeks old Alexander suffered heart failure.

As Alex continues to fight, he must undergo 17 weeks of chemotherapy and other treatments. The chemo is designed to stop the spread of the disease. For Alex to survive long-term he must undergo a bone marrow transplant (BMT). The BMT needs to be preformed at a specialty hospital in Cincinnati, Seattle or Milwaukee. The actual transplant is done in one day followed by a hospital stay of four to six weeks, again in PICU, while his body’s immune system regenerates.

After Alex is released from the hospital, he must reside within 30 minutes of the hospital for up to six months because if the HLH comes back, it must be treated within hours of being discovered. So for those six months his parents, Myriam and Gerald, will not be able to work.

As Myriam and Gerald help Alex in this battle, they need financial support to continue medical treatments, pay outstanding medical bills and purchase medical related necessities. The parents will both miss work to assist with Alex’s care and they need to continue to maintain their home, and care for their two other children.


Kirkwood Children

Mike, 15 years old and a freshman at Brother Rice High School, Tim, 11 years old attends Liberty School in Orland Park and Megan, 9 years old attends Prairie Elementary School. They each enjoy sports and extracurricular activities.

Their father, Jack lost his job in July 2009. The family maintained their Cobra insurance as he searched for a new job. In September, Jack noticed a lump on his neck. He underwent surgery to remove tonsils and learned that he had Stage 4 cancer in his neck, throat, tonsils and lymph nodes.

Jack’s current regimen of chemotherapy and radiation requires multiple hospitalizations over the next three months. The treatments leave him extremely fatigued and nauseous. The radiation burns to the inside of his neck have made it extremely difficult him to eat, drink or swallow. Jack has had significant weight loss and has developed a rash over his entire body. The rash has left him immuno-compromised and not able to consistently participate in activities of daily living.

He has nine days of recovery between treatments and he remains positive and encouraged by his wonderful medical team and support system. Many of their friends and family have offered their time and energy to help the family.

Mother and wife, Beth took a job as a substitute teacher to try and make ends meet. The family is overwhelmed with their bills; mortgage, utilities, food, insurance, medical bills. Their Cobra insurance runs out in 6 months. The family knows Jack is facing a serious illness with a very uncertain outcome.


Lauren McGovern

Lauren was involved in a near drowning accident on July 28, 2009 when she was 2 and 1/2 years old. She was taken to Hope Children's Hospital in Oak Lawn where she remained in ICU for approximately 2 weeks. During this time a feeding tube was inserted. After she was off the ventilator, she was moved to Pediatric Rehab at Hope and it was soon determined that she would benefit from insertion of a Baclofen Pump to help alleviate some of the hypertonicity she was experiencing.

In September 2009, she was transferred to Rehab Institute of Chicago. While there, she participated in daily physical, speech and occupational therapy as well as management of the Baclofen Pump. She was discharged to home just before Christmas.

Lauren has a wheelchair, and the family's front room is set up much like a hospital room. She has an Oxygen concentrator, suction machine, feeding pump and receives multiple medications via the feeding tube daily. At present, insurance is still covering nursing in-home care but that will not always be the case.

Lauren is participating in outpatient therapy at a satellite of RIC in Homewood three times a week. Other days, her Mom continues to perform exercises with her as she was taught at RIC. Mom has still not been able to return to work, but hopes to soon do so, at least a couple of days a week.

Hyperbaric therapy has been discussed, but insurance would not cover this lengthy and costly procedure. Continual adjustments to the Baclofen Pump are required as are follow-up with multiple consulting physicians. Last week Lauren was evaluated by a Neuro-Opthalomogist who determined that she will require glasses to help with her cognitive response. Next week she will follow up with the Neurosurgeon who inserted the Pump. At this point, the family is living day-to-day with Lauren’s prognosis.


Cecilia Pescetto

Cecilia Pescetto was born September 2005 to Dia and Gabriel Pescetto, four weeks premature, with a deletion on her 15th chromosome and a diagnosis of developmental delay.

Her parents knew there was a medical problem with Cecilia but doctors insisted that it was colic. At five months, the pediatrician realized something was not right with Cecilia. The doctor recommended early intervention therapies (OT, PT and Speech) which her parents began immediately through the state. Unfortunately, at three years of age, a child is no longer covered by the states early intervention programs. Denied by insurance, at one point, because of lack of funds in the household, Cecilia had to stop going to therapy.

In May 2009, Gabriel lost his job, leaving Dia the sole provider for the family. Her salary and insurance does not cover the medical care Cecilia needs. In June 2009, Dia applied for the State of Illinois All Kids Care card, and she began working with a specialist at UIC.

As a result of her chromosome abnormality, Cecilia also was diagnosed with aprixia of speech (a motor speech disorder). Aprixia of speech leaves a child with a great amount of difficulty planning and producing the precise, highly refined and specific series of movements of the tongue, lips, jaw and palate necessary for intelligible speech.
Cecilia also struggles with hypotonia, a disorder that affects motor nerve control by the brain or muscle strength, resulting in low muscle tone often involving low muscle strength.

Cecilia’s main form of treatment is intense occupational therapy, speech and physical therapy. The doctor prescribes daily therapy for Cecilia, but she only receives a portion of those sessions because of the high cost and her parents just do not have the funds to pay for it.


Ali Schiffner

Ali, an indomitable 13 year old girl who shows strength and courage, has a chronic medical condition that is unexplainable and unpredictable. Last summer Ali was diagnosed with Crohn’s disease. During the summer Ali suffered extreme pain which led to an emergency surgery for a perforated intestine. Ali suffered a long series of post-surgical complication that left her hospitalized for four months.

In December 2009 she underwent a second major surgery that lasted seven hours.

Ali continues to recover at home. She has begun maintenance medication for the Crohn’s which may need to extend over the next few years. She is preparing for an additional reconstructive surgery that may happen as early as next summer.

Today thought, in spite of the hurdles she will have to overcome in the years ahead, she still smiles at the future and is an inspiration to all.