The journey of infertility is heartbreaking and exhausting, to say the least. Not two stories are alike, every couple’s and personal experience is unique. For example, G and B’s story is not one of a struggle to become pregnant, but that to have a child free of a genetic disorder that B is a carrier of. Here is their story: “Thank you for the opportunity to share with you our story. G and I have been married for 14 years and have 2 sons, S is 7 and J is 3. J recently passed away in November 2017 due to complications from a genetic disorder he was born with called Myotubular Myopathy (MTM). J was diagnosed with MTM in January 2015 when he was 6 months old, after spending the first 3.5 months in the NICU. We learned during his diagnosis that I am a carrier of the MTM-1 Genetic Defect that causes MTM. MTM is an extremely rare genetic neuromuscular disorder that is characterized by weakened skeleton muscles. J’s symptoms were present at birth with his profound muscle weakness, swallowing difficulties, and respiratory difficulties, all related to the weakness of his muscles. This disorder occurs in 1 in every 50,000 male births in the general population. Statistically, 50% of these children do not live past their 2ndbirthday. J was 3.5 when he passed. J was extremely medically fragile, and his care was very complex. He required a great deal of support including BiPAP through a mask overnight and during his naps to assist with the inflation of his lungs. An intense respiratory management protocol, which included an airway clearance device, frequent suctioning of his own secretions and because of his difficulty swallowing, he was tube fed exclusively. J also received a number of therapies in the home as well as teachers to assist in his education since he was not stable enough to receive services outside of the home. Given the extensiveness of J’s care, in February of 2015 G and I made the decision for me to leave my full-time career to be home with J. This was a very difficult decision given the fact that I made the majority of our income. However, J needed me home and we were more than happy to make any sacrifice for him. I have taken on a number of small jobs that have allowed me the flexibility to work from home as well as contribute to our income. As you can imagine, over the past 3.5 years our financial situation has become increasingly difficult given the reduction in our income and demands placed on us to care for a medically fragile child. Our goal was to keep J as healthy as possible and to learn everything we could to help him in his everyday life. We devoted a great deal of our time and resources to J and in response J thrived. J was an incredible boy and although it was short, his life was filled with such meaning and purpose. He has forever changed our family and we are so thankful for the gift of his life. This leads us to our current request for a grant through Starfish Infertility Foundation to help us fund IVF and Pre-Genetic Diagnosis. Both G and I have always wanted more children, however, after J, this idea seemed impossible given the amount of time and resources that were devoted to his care. Additionally, given the fact I am a carrier of the gene that causes this disorder, there is a 50/50 chance that I would pass this defective gene on, so having another child without other measures such as PGD was very risky. Given our age, we believe this is one of the last opportunities we may have to grow our family. We have so much love to give and we want nothing more than to share that love with another child. Additionally, our oldest son S has not only taken the loss of his little brother J very hard but is also mourning the loss of his role as a ‘big brother.’ Being a big brother was one thing that S was most proud of, he and J had a very special bond. He never saw J as someone who was hooked to medical equipment or the long list of challenges he faced, he only saw love. S’s teachers would often report to us how he would talk about J all the time and we would see it in his writings and drawings from school. He LOVED being a big brother. S never complained once about long hospital stays attention that may have been diverted from him to care for J, or the many other challenges we faced as a family. S was so enamored by J, all he wanted to do was to hug and kiss him all the time. He just told me the other day that he wishes he could have held J more (because of his weakness it was very difficult for S to hold J). Shortly after losing J, S began to ask us if he could have another little brother or sister. He has written letters to Santa, wished on a four-leaf clover, birthday candles, as well as included this request in his nightly prayers. To give S the gift of being a big brother to another child would be so healing to our heats. The total cost of one IVF cycle is $14,050.00 which includes blood work, ultrasound monitoring appointments, retrieval of eggs, anesthesia on the day of retrieval, processing of sperm on the day of the retrieval, fertilization, embryo freezing and storage up to one year and one embryo transfer, one doctor consultant and one pregnancy test. Additionally, Pre Genetic Diagnosis (PGD) testing is approximately $6,000. Our insurance will not cover IVF, but we are in the process of requesting our insurance to cover the PGD portion given the known genetic disorder. We have yet to get an approval from the insurance company and have been advised that even if an approval is granted, it is not a guarantee that they would pay for it once services are rendered. Medication is not included in any of these prices and I do not yet know the cost associated with this.” We share stories we have received to give people a voice and for those who read them to hopefully be able to relate in some way. Although infertility is a trying journey, it is comforting to hear other’s stories and see their strengths.
Ways to Donate or Get Involved with Starfish Infertility Foundation:
- Through the website – www.starfishinfertilityfoundation.org: (https://starfishinfertilityfoundation.org/star_fish_homepage/get-involved/)
- Gift through Paypal to: info@starfishinfertilityfoundation.org
- Kroger Rewards If you shop at Kroger and have a Kroger Plus Card, please visit https://www.kroger.com/communityrewards Simply sign in, enroll now, enter organization number {PT873 for SIF}, enroll – DONE in less than 2 minutes!! Kroger will then donate a portion to SIF! How easy is THAT???
- Amazon Smile Go through www.smile.amazon.com to place your Amazon Orders and Choose STARFISH INFERTILITY FOUNDATION! A Portion of your Purchase will Automatically be Donated!
