Helping Our Apert Angel
Spende geschützt
I have been blessed with five healthy children. Because of this, I want to do everything in my means to help my colleague and friend, Jay, raise enough funds to be able to cover his daughter's upcoming, unavoidable surgeries and procedures associated with Apert Syndrome. Medical expenses, even subsidized by insurance, are extremely costly. Over the course of the next 14 years, Jay's out of pocket expenses for costs related to healthcare and his baby's surgeries will exceed $650,000.00. If you simply send the Lent's story to your social media network, you can be a part of making a difference in his daughter's life. Any donation you or your loved ones and friends can contribute will make a world of difference to the Lent family.
Here is their story, as literally expressed to me from Maribel and Jay:
The beginning of our journey with an Apert Angel
After a few years of trying to get pregnant, my husband and I welcomed our daughter, Elizabeth, into the world. She represents her birth season of Spring with new life, hope, and love perfectly. Being 10 years apart from our youngest and surviving a high risk pregnancy, Ellie was special to us from the start. However, we did not realize how special Ellie truly was to be until she was placed in my arms, while simultaneously being told that she was born with webbing of her hands and feet.
The first 72 hours of our baby girl’s life brought new discoveries and a roller coaster of emotions. We learned the webbing, known as Syndactyly, was one of many abnormalities she was born with. A CT Scan revealed that Ellie has craniosynostosis, which is the premature closure of one or more of the skull sutures. This can cause increased pressure inside the head resulting in abnormal brain and skull growth. Based on her symptoms, Elizabeth was diagnosed with Apert Syndrome. A molecular DNA analysis later confirmed the diagnosis. Apert Syndrome is a rare genetic form of craniosynostosis, that can also cause the abnormal development of the head, face, hands and feet. It is estimated to occur in 1 in every 65,000 to 88,000 newborns. Although, we had yet to understand the full implication of what having an Apert baby would entail, we knew our family’s dynamic, emotions and finances were forever changed. Our baby will need to endure numerous surgeries, have a team of doctors to include, but not limited to plastic surgeons, neurosurgeons, opthamologists, orthopedists, ortolaryngologists, pulmonologists, etc. She would more than likely need to be in an early intervention program, may not achieve a normal IQ and potentially be subjected to social ridicule. Our special baby turned out to be a special needs baby, though no less loved or wanted. In fact, she has become our angel on earth.
Introducing our Ellie
Ellie was born with a high arched palate that prevented her from intaking her feeds from a bottle nor the breast. She had to be fed my breast milk via an O-tube. An N-tube was not able to be used because she has a very narrow nasal passage. In addition, she needs to be positioned at a 35 degree angle due to reflux. Ellie had to learn to suction and drink from a bottle with specialized bottles for cleft palates and with jaw support. As a result, she remained in the NICU for 28 days. She left the hospital with an apnea and oxygen saturation/heart rate monitor. On the night of her 2 month birthday, she had a desaturation in the low 40’s, turned gray and was slow to respond. She was taken to the ER in an ambulance and remained in the NICU for 4 days and now has stand by oxygen.
Ellie is currently in the care of an amazing Craniosynostosis team at the Children’s Hospital of Philadelphia (CHOP). At 4 months of age, she underwent her first Posterior Cranial Vault Distraction Osteogenesis (PVDO) Surgery. In essence, the back of her skull was reshaped and enlarged to give the brain more room by adding 2 inches of skull bone. This was achieved by cutting the bone and slowly separating the cut ends by turning the distractors over time. Dad was in charge of this process twice a day for 6 weeks. At 8 months of age, Ellie is currently recovering from her distractor removal surgery. Although, the plates and the distractors were removed, dissolvable plates were attached because the new bone has not yet fully grown. In the next couple of weeks, she will undergo another surgery to have a VP shunt placed because she has developed hydrocephalus. This is the buildup of cerebrospinal fluid (CSF) within the ventricles of the brain causing pressure. She will have the VP shunt for life. Plans to have the Syndactyly Release surgery are being made to occur before or shortly after her 1st birthday. She will need to have two separate surgeries on each hand. Ellie also has wide-set (hypertelorism) bulging eyes (ocular proptosis), with down slanted eyelids due to shallow eye sockets. Her eyes do not point in the same direction (strabismus) and she is unable to close her eyes all the way. Ellie needs to use preservative free eye drops 4 times a day, will need surgery down the road, and may possibly need to wear glasses. Around age 5, she will have a Lefort III Advancement with possible distraction osteogenesis. This will help correct the position and function of the midface and eye sockets. Ellie will need to repeat this surgery in her teen years.
Ellie also has 1 floating rib, a prominent spinal column that will need to be checked, and is delayed in her dental rupture. More than likely, she will have dental problems common with the syndrome. Appointments with a cardiologist, pulmonologist, and an orthopedist are to be made once she recovers from her upcoming surgery.
Ellie has been evaluated and qualified for early intervention. She will start with occupational and physical therapy. She is yet to roll onto her stomach but rolls from her tummy to her back. She is able to reach and interchange a toy from one hand to another. She is starting to sit up while we hold her, which is very inconvenient at feeding time! She is unable to hold her bottle consistently. She is almost a master at holding her heavy head up without wobble and can keep it up for longer periods of time. She is fascinated with her hands and feet and has recently started pulling a foot to put into her mouth. She hasn’t quite made it yet but she is quite determined to do so. Her eye tracking has improved and she recognizes her family. She says “Mama” which melts my heart and heals my soul, and she loves it when her daddy sings " A You’re Adorable“ (alphabet song). It has the power of an off switch when she fusses or cries. Ellie, definitely communicates with different sounds and body language when she's hungry, tired, frustrated and happy. She’s learned to manipulate us into giving her attention with fake coughs and adorable smiles.
Our angel is a princess warrior, she has endured so much at such a young age and yet bounces back stronger each time. Our family and friends will continue to shower her with love and strive to instill independence and confidence regardless of her medical limitations or physical appearance. It is our hope for Ellie to have the necessary developmental and medical care needed for her to reach a functional and normal life expectancy. However, we are not able to do so alone. We are faced with an enormous amount of medical bills, financial overhead associated with her surgeries, follow-up care trips to CHOP, etc. It is with this need in mind, that we ask you to please help us make sure that Ellie will be afforded the proper care. Our immediate need is to raise funds to pay our insurance premium of $ 1,800. Anything that can be given will be received with extreme gratitude. May past and future donors be recompense with many blessings. Thank you for taking your time to read this.
Maribel and Jay Lent
P.S.- For the intent and purpose of this post with GoFundMe., we have tried to minimize our story. However, many parts of Ellie’s journey were left unsaid. Therefore, we are in the process of starting a blog to help with Apert Syndrome Awareness sharing our angel with all of you.
Here is their story, as literally expressed to me from Maribel and Jay:
The beginning of our journey with an Apert Angel
After a few years of trying to get pregnant, my husband and I welcomed our daughter, Elizabeth, into the world. She represents her birth season of Spring with new life, hope, and love perfectly. Being 10 years apart from our youngest and surviving a high risk pregnancy, Ellie was special to us from the start. However, we did not realize how special Ellie truly was to be until she was placed in my arms, while simultaneously being told that she was born with webbing of her hands and feet.
The first 72 hours of our baby girl’s life brought new discoveries and a roller coaster of emotions. We learned the webbing, known as Syndactyly, was one of many abnormalities she was born with. A CT Scan revealed that Ellie has craniosynostosis, which is the premature closure of one or more of the skull sutures. This can cause increased pressure inside the head resulting in abnormal brain and skull growth. Based on her symptoms, Elizabeth was diagnosed with Apert Syndrome. A molecular DNA analysis later confirmed the diagnosis. Apert Syndrome is a rare genetic form of craniosynostosis, that can also cause the abnormal development of the head, face, hands and feet. It is estimated to occur in 1 in every 65,000 to 88,000 newborns. Although, we had yet to understand the full implication of what having an Apert baby would entail, we knew our family’s dynamic, emotions and finances were forever changed. Our baby will need to endure numerous surgeries, have a team of doctors to include, but not limited to plastic surgeons, neurosurgeons, opthamologists, orthopedists, ortolaryngologists, pulmonologists, etc. She would more than likely need to be in an early intervention program, may not achieve a normal IQ and potentially be subjected to social ridicule. Our special baby turned out to be a special needs baby, though no less loved or wanted. In fact, she has become our angel on earth.
Introducing our Ellie
Ellie was born with a high arched palate that prevented her from intaking her feeds from a bottle nor the breast. She had to be fed my breast milk via an O-tube. An N-tube was not able to be used because she has a very narrow nasal passage. In addition, she needs to be positioned at a 35 degree angle due to reflux. Ellie had to learn to suction and drink from a bottle with specialized bottles for cleft palates and with jaw support. As a result, she remained in the NICU for 28 days. She left the hospital with an apnea and oxygen saturation/heart rate monitor. On the night of her 2 month birthday, she had a desaturation in the low 40’s, turned gray and was slow to respond. She was taken to the ER in an ambulance and remained in the NICU for 4 days and now has stand by oxygen.
Ellie is currently in the care of an amazing Craniosynostosis team at the Children’s Hospital of Philadelphia (CHOP). At 4 months of age, she underwent her first Posterior Cranial Vault Distraction Osteogenesis (PVDO) Surgery. In essence, the back of her skull was reshaped and enlarged to give the brain more room by adding 2 inches of skull bone. This was achieved by cutting the bone and slowly separating the cut ends by turning the distractors over time. Dad was in charge of this process twice a day for 6 weeks. At 8 months of age, Ellie is currently recovering from her distractor removal surgery. Although, the plates and the distractors were removed, dissolvable plates were attached because the new bone has not yet fully grown. In the next couple of weeks, she will undergo another surgery to have a VP shunt placed because she has developed hydrocephalus. This is the buildup of cerebrospinal fluid (CSF) within the ventricles of the brain causing pressure. She will have the VP shunt for life. Plans to have the Syndactyly Release surgery are being made to occur before or shortly after her 1st birthday. She will need to have two separate surgeries on each hand. Ellie also has wide-set (hypertelorism) bulging eyes (ocular proptosis), with down slanted eyelids due to shallow eye sockets. Her eyes do not point in the same direction (strabismus) and she is unable to close her eyes all the way. Ellie needs to use preservative free eye drops 4 times a day, will need surgery down the road, and may possibly need to wear glasses. Around age 5, she will have a Lefort III Advancement with possible distraction osteogenesis. This will help correct the position and function of the midface and eye sockets. Ellie will need to repeat this surgery in her teen years.
Ellie also has 1 floating rib, a prominent spinal column that will need to be checked, and is delayed in her dental rupture. More than likely, she will have dental problems common with the syndrome. Appointments with a cardiologist, pulmonologist, and an orthopedist are to be made once she recovers from her upcoming surgery.
Ellie has been evaluated and qualified for early intervention. She will start with occupational and physical therapy. She is yet to roll onto her stomach but rolls from her tummy to her back. She is able to reach and interchange a toy from one hand to another. She is starting to sit up while we hold her, which is very inconvenient at feeding time! She is unable to hold her bottle consistently. She is almost a master at holding her heavy head up without wobble and can keep it up for longer periods of time. She is fascinated with her hands and feet and has recently started pulling a foot to put into her mouth. She hasn’t quite made it yet but she is quite determined to do so. Her eye tracking has improved and she recognizes her family. She says “Mama” which melts my heart and heals my soul, and she loves it when her daddy sings " A You’re Adorable“ (alphabet song). It has the power of an off switch when she fusses or cries. Ellie, definitely communicates with different sounds and body language when she's hungry, tired, frustrated and happy. She’s learned to manipulate us into giving her attention with fake coughs and adorable smiles.
Our angel is a princess warrior, she has endured so much at such a young age and yet bounces back stronger each time. Our family and friends will continue to shower her with love and strive to instill independence and confidence regardless of her medical limitations or physical appearance. It is our hope for Ellie to have the necessary developmental and medical care needed for her to reach a functional and normal life expectancy. However, we are not able to do so alone. We are faced with an enormous amount of medical bills, financial overhead associated with her surgeries, follow-up care trips to CHOP, etc. It is with this need in mind, that we ask you to please help us make sure that Ellie will be afforded the proper care. Our immediate need is to raise funds to pay our insurance premium of $ 1,800. Anything that can be given will be received with extreme gratitude. May past and future donors be recompense with many blessings. Thank you for taking your time to read this.
Maribel and Jay Lent
P.S.- For the intent and purpose of this post with GoFundMe., we have tried to minimize our story. However, many parts of Ellie’s journey were left unsaid. Therefore, we are in the process of starting a blog to help with Apert Syndrome Awareness sharing our angel with all of you.
Organisator
David Strumeier
Organisator
Morganville, NJ
