Hadley Heffta, sweet girl of Kirsti & Derek Heffta of Ulen, MN, was diagnosed with a very rare genetic disorder called Beckwith-Wiedemann Syndrome shortly after birth.  She was born a month early weighing a whopping 9lbs, 8oz – not typical of a premature birth.  She spent her first 8 days of life in the NICU battling low blood sugar and bilirubin issues.  With her diagnosis of BWS comes a 30% higher risk of childhood cancer, and every 3 months until Hadley is 9 years old, she will undergo cancer screens that consist of an abdominal/renal ultrasound and an alpha-feta protein tumor marker blood test.  Her parents say Hadley is a warrior and does very well with her scans and doctor visits (but mom and dad are riddled with anxiety).  Hadley also has macroglossia (an enlarged tongue) which is a common marker for BWS and what helped her neonatologist make the diagnosis.  She has never been able to comfortably close her mouth, which makes meal time a bit more challenging.  She will soon undergo surgery called the “Modified Keyhole Glossectomy” (a tongue reduction) at Children’s Hospital of Minneapolis.  This is a fairly traumatic surgery with a tough recovery that will require a minimum of five days in the hospital.  She will have an additional surgery, that will require a separate stay at Children’s Hospital, to place tubes in both ears to fight a constant battle of ear infections.

Hadley has two big sisters at home, Maci (4) and Charli (3). Derek is the sole source of income for the family and will be out of work for several weeks due to the upcoming surgeries.  Kirsti stays at home with the girls and manages the household so has no income.  They have fallen behind on medical bills and other debt.  Paying for numerous appointments, surgery, prescriptions, therapies, scans – not to mention lodging, food, gas and other essentials for the family stay in the Cities is going to be very expensive.  Loved ones have stepped forward to help raise funds for the family and bring awareness of BWS.  Your online donation will be boosted 20% by Lend A Hand Up and 100% of the proceeds will go to the Heffta family.  Cash/Check donations should be made directly to Kirsti or Derek Heffta.