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Lotte Diomede Of SUDBURY Age: 44 Mom of: Nicholas, 10 and Anna Belle, 8 Occupation: Stay-at-home mom and volunteer BY

bonnie j. toomey, steven king photography

“No one ever told us it was going to be easy,� says feisty mom of two, Lotte Diomede, from Sudbury, Massachusetts. Lotte moved to the Boston area from Denmark in 1994, marrying her husband Gary in 1998. While pregnant with their first child, doctors told Lotte at her seventh month checkup that her son would be born with water in the brain, a condition known as hydrocephalus. She was advised to go home and “enjoy� the rest of her pregnancy. Overwhelmed and angry, someone told her to pray. But Lotte felt she had been a good mother; she didn’t smoke or drink alcohol or coffee. Plus she had stayed fit. Lotte knew she had to fight for Nicholas. She transferred to Beth Israel and sat with Dr. Jodi Abbot, an obstetrician and gynecologist, who gave her the answers she needed. “I felt at least I knew where to focus and how to manage the rest of my pregnancy without going insane,� explains Lotte. According to the Hydrocephalus Association, one to two of every 1,000 babies are born with hydrocephalus,

making it as common as Down syndrome and more common than Spina Bifida or brain tumors. Early treatment increases the chances of a better prognosis. Nicholas arrived four weeks early via C-section and was transferred to Children’s Hospital in Boston for surgery to implant a shunt that would relieve pressure in his brain. And throughout the first six years of Nicholas’s life, he underwent surgery after surgery: an operation on each thumb to increase his grip strength, feeding tube surgery, shunt surgery, a shunt revision and two hernia operations. “My son never said 20 words and yet he’s getting tested every single day of his life,� says Lotte. The hardest part about having a child with disabilities, says Lotte, is that everyone seems to have a hand and influence in what your child does every day. Nicholas has 13 specialists. “Sometimes I have to say, ‘Stop. It’s up to me!’� says Lotte, whose number one priority is to help her son with his communication and mobility. Her son is now a happy 10-year-old

brother to his 8-year-old sister, Anna Belle. “She’s an amazing little girl, and Nicholas is a trooper and brings good karma to us all,� says Lotte. “I love them both the same.� Lotte volunteers at her children’s schools and learns all she can about services for children with disabilities. She volunteers as co-chairperson at the Massachusetts Commission on Disabilities so she can keep up with the law. Her spirited get-itdone attitude ignites the people around her, and in 2008, she spearheaded a fundraiser to help build a universal playground for all children, including those with disabilities, at Haskell Field in Sudbury, Massachusetts. “I was just hoping for a handicapped swing, and we got a whole new park!� exclaims Lotte, who has received many

letters from families who are now able to take their children with disabilities to play at the park. In 2009, she filed her own 501-C3 and founded SMILE MASS, an acronym for “Small Miracles in Life Exist.� Her latest “fun�-raiser is a scavenger hunt by limousine to help raise money for special beach wheelchairs. She is determined to give more children with disabilities the chance to enjoy a day at the beach with their families. For many children with severe disabilities like Nicholas, everyday necessities such as getting out of bed, breathing independently, getting to the bathroom and eating require constant help from family, friends and teachers. Though Nicholas is considered

New England Brachial Plexus Family Group

Winter Gathering

4BUVSEBZ %FDFNCFSSE t".UP1. Museum of Science, 1 Science Park, Boston, MA 02114 Function includes: $PNQMJNFOUBSZDPOUJOFOUBMCSFBLGBTUt'BNJMZ.FFUBOE(SFFU Presentation by Dr. Peter Waters of Boston Children’s Hospital Admission to explore the museum There is no cost to attend! 1MFBTF3471UP,BUIFSJOF4IFMEPOBUOFCSBDIJBMQMFYVTHSPVQ!HNBJMDPNt 36 NOVEMBER2011

November 2011 baystateparent Magazine  

November 2011 edition of baystateparent Magazine

November 2011 baystateparent Magazine  

November 2011 edition of baystateparent Magazine