Lawson’s Intensive Therapy Road

***UPDATED 9/7/24***

Our beloved son Lawson turned 5 in July. He is a sweet, funny, and lovable boy who strives daily to enhance his mobility and mirror his peers' running. In November, we will celebrate four years of seizure-free living, a true blessing. Although Lawson still requires a G-tube and VP Shunt, we diligently monitor his hydrocephalus. His primary hurdle is improving his right hand's functionality, which hinders his ability to perform everyday tasks like ADL’s, opening objects, using writing utensils, and cutting with scissors, etc. While Lawson has made strides in walking and running, he quickly becomes fatigued. To address this, we are working to enhance his mobility, particularly when navigating steps, curbs, longer distances and entering vehicles. We continue to pursue intensive therapy and are scheduled for a two-week session in Phenix City, Alabama. Due to the limited availability of slots, we must secure appointments well in advance. Unfortunately, insurance does not cover these therapies, which cost between $4,000 and $6,000 each, exclusive of travel and accommodation expenses. We kindly request your continued prayers for Lawson's well-being and for the provision of necessary resources to facilitate our journey. We appreciate your support.

Lawson Haddock was born July 22, 2019 and everything went perfect. We were so happy and excited to welcome our bundle of joy. Everything was going great until April 4, 2020 at dinner he started having these weird eye roll, arm jerk, startled looking seizures. We were rushed to Thomas hospital then sent to USA PICU. That’s when our world changed. •April 5, 2020 he was diagnosed with Right Hemiplegic cerebral palsy. During birth Lawson suffered a major stroke that has affected 90% of the left side of his brain and it bled over to around 15% of the right side. He is in a right AFO (ankle-foot orthosis/leg brace) and only able to wear certain types of shoes that fit this. •He also was diagnosed with what we thought to be focal seizures. He continued developing these extremely odd, repetitive, jerking movements/eye rolls. We were originally told the movements weren’t a concern and would go away with medications used to treat focal seizures , but our instincts told us that something was wrong. We immediately set out for a second opinion (in the middle of the COVID pandemic, so it was hard getting in anywhere for months), but God opened the door to UAB. His neurologist there watched a video of a seizure we recorded and said something didn’t seem right she wanted an EEG immediately and man are were so relieved that she did. •Lawson was diagnosed with a very rare type of seizure/epilepsy called Infantile Spasms (IS) back In June. Only 1200 children, usually under the age of one, are diagnosed with Infantile Spasms every year in the US. They are considered to be extremely dangerous and are often described as catastrophic because it can prevent the child’s brain from developing during a very critical time. It is urgent to treat these spasms quickly and aggressively. He began the extremely high dose of oral steroids for this and they failed twice. Since the beginning in April, Lawson has undergone numerous tests & has been placed on a lot of heavy duty medications. For now, the seizures need to be stopped so Lawson’s development can continue to grow. •Lawson’s treatment for infantile spasms includes ACTH: a hormone injection, as well as an anticonvulsant (4 capsules) to prevent further seizure activity. However, one vial of this constituted medication costs $40,000. Lawson needed at least 5 vials. Insurance denied this treatment, and we were blessed the manufacturer covered it at cost but it’s simply not enough. •Lawson has also developed high blood pressure and very low cortisol levels because of long-term steroid use. He’s on two medications for these and requires blood pressure checks, lab draws and urine checks weekly. Lawson is about to be discharged from UAB’s EMU (epilepsy monitoring unit) where he’s had a 48 hour VEEG to confirm everything the doctors were seeing and prepare for surgery. Lawson has had a minimal of 20 seizures since Thursday night. Lawson will be completing his last three weeks of acth injections at home. He will have to be off these steroid injections at least two weeks before surgery can happen because they lower his immune system. He’s also now on yet another anticonvulsant medication beginning today. The team of doctors is presenting his case to the neurosurgery team next week to get a consult for us with a surgery date. He will need a left functional hemispherectomy. This surgery has a 95% chance of taking away his seizures/spasms. This surgery is very very extensive and major, lasting anywhere from 8-12 hours. Lawson requires 24/7 observation for spasm/seizure monitoring, occupational, speech & physical therapy 3 times a week & many many EEGs. Due to Amanda being present for several appointments each week, she’s been unable to continue working. All of Lawsons test for infantile spasms/seizures and rehab docs for his CP are at UAB. Since June, the family has made 8 trips to UAB. Two were inpatient hospitalizations. I am asking for any and all help you can provide to Nathan and Amanda’s family. All donations will be put toward left over medical bills, supplies for injections, prescriptions, equipment that insurance does not cover, physical/occupational/speech therapies, travel expenses to and From Birmingham, nutrition, groceries, diapers/wipes, clothes, etc. Not only will this money help Lawson and his parents, but his two brothers as they also deserve as much normalcy as possible. We are a very tough family, but we need your help. Thank you all so much for the continued prayers for our Lawson man and we know God is in complete control! #Epilepsywarrior#infantilespasms#cerebralpalsy#specialneedsmama#LawsonFinn#ourmonkey#raredisease