"Parents of children diagnosed with Down syndrome express that their children foster personal growth, cultivating a superior sense of empathy and humanity."

"Parents of children diagnosed with Down syndrome express that their children foster personal growth, cultivating a superior sense of empathy and humanity."

In a heartwarming tale from Lissycasey, Co Clare, Bernie and Crohan O'Kennedy are navigating the joys and challenges of raising their daughter, Pippa, who was born with Down syndrome in July 2023.

Pippa's birth was a healthy one, with a vacuum-assisted delivery and a high Apgar score. However, after showing signs of excessive sleepiness, she was transferred to a neonatal intensive care unit (NICU) and was initially fed milk via a nasal gastric tube.

The O'Kennedies were referred to a foetal specialist during the pregnancy, following Pippa's diagnosis. They also received reassurance from a Harmony test, which indicated a low probability of a chromosomal abnormality.

Thankfully, Pippa's family had the support of Down Syndrome Ireland (DSI), a national organisation that provides "all through life" supports for people with Down syndrome and their families. DSI offers information, emotional support, early interventions such as speech and language therapy, and community integration through local branches and events like the Special Olympics.

Pippa has been able to benefit from speech and language therapy, thanks to the support of DSI. This is a crucial service, as the Children's Disability Network Team (CDNT) only provides occasional, six-week blocks of therapy, which is not sufficient for children with Down syndrome.

The O'Kennedies' story highlights the importance of the work done by DSI. They are currently appealing for Government funding to sustain and expand the Keep Communicating programme, a new initiative designed to help children with Down syndrome aged six months to 12 years. Olive Buckeridge, DSI's national speech and language therapy co-ordinator, devised and trialled this programme.

The Keep Communicating programme has been able to help more children on a consistent basis by training SLT assistants to support their small team of therapists. This has been a great relief for parents, who have been frustrated by a lack of access to speech and language therapy through the HSE.

As Pippa, now two years old, continues to grow into a "powerhouse" of a toddler, her family is looking forward to the arrival of a new baby boy in just under three months. Bernie and Crohan O'Kennedy, who conceived their children naturally and achieved pregnancy through in vitro fertilization (IVF) in 2022, are testament to the hope and support that families can find during such a significant journey.

Bernie O'Kennedy advises parents of children with Down syndrome to accept their diagnosis and learn from their child. She encourages them to seek the support available from organisations like DSI, which are dedicated to helping families navigate the challenges and celebrate the joys of raising a child with Down syndrome.

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