Meet baby Lunah, our miracle born 03 Dec 2015! A miracle who as by the books is not supposed to be here with us, alive! Lunah has been diagnosed with Trisomy18 at 3 wks old and has a big (A)VSD (big hole in the middle of her heart) & pulmonary hypertension, who might require surgery.
We have been told that due to her syndrome no doctor will operate on her. But looking for opportunities we found specialists who are willing to assess Lunah to increase her chances to a longer and more comfortable life.
At the moment Lunah is thriving and is in good general health, so we can not wait for her heart & lungs to start failing in order to act, 'cause then it will be too late. Lunah has chances, Lunah has shown and is still manifesting a great will to live! She just turned 6 months and we would go the extra mile to see her big blue eyes and lively personality reach many more milestones. Our most imminent & crucial goal is to get to these specialists, ON TIME, for Lunah to have her opportunities met.
Where? When? By 10 July 2016 at 2 conferences in the US, by 2 of the most recognized and key organisations who have made these special children with a chromosome imbalance their focal point, where Lunah is already registered: The Chromosome 18 Registry & Research Society, and SOFT US. At these conferences these specialists gather once each year and assess these children for free, inform on the latest and assisst the parents, families & caregivers with all necessary information for their better care.
Due to Lunah's current heart condition and pulmonary hypertension we have been advised to use an Air Ambulance as transportation to reach our destination. The cost for the flight alone, ARUBA-MIAMI-ARUBA, amounts to $45K.
Lunah is a miracle, conform the books only 9-18% of these children with T18 are still alive at 6 months. Lunah has chances, Lunah wants to live...help our Lunah get there! She keeps beating the odds and contradicting the statistics! Lunah is worthy of all chances, she is the light of our family.
Join our fight for her chances to life, the light of Lunah .... from your heart to hers!
*Lunah Rijksen*03 Dec. '15*Aruba*
- Mariëlle de Rooy
- Joeri King
- Agnes Paras